You are not alone

Back in 2017 I wrote a blog post entitled, ‘Lonely.’ It was a deep dive into how isolating and lonely living with a hidden, chronic illness can be. Covid times did bring this reality to the forefront of those people who had never experienced a lockdown of their lives; but how quickly that was forgotten when “normal” life started up again. Before I go any further, I would like to caveat this blog by saying a few things: firstly, I know the NHS is on its knees and I understand, truly, how hard the staff work. I also know they are overworked and underpaid. I acknowledge that these professionals go into their jobs to help people; It’s just that sometimes, the system fails and the patients are the ones who suffer.

Loneliness has taken on a slightly didn’t form for me in recent years. I have sat in front of countless GPs and specialists begging for help with my facial pain. But, as always with me, (ho hum), I have never quite fit into a neat little box and been an easy case to “solve”. My facial pain is all over my face and not consigned to one side; “odd” to doctors as facial pain, including trigeminal neuralgia is only ever on one side and it is very “unusual” to see such extensive pain on both sides and on the forehead, chin, nose and eye lids. “Have you seen a psychologist to help you with this?” I have been prescribed countless drugs of all strengths, all with many side effects, all targeting nerve pain. How “odd” then that none of them have helped me, even marginally. “Most” people with the facial pain I describe would be helped by these types of drugs….”have you ever had CBT to help you?” I have had many an MRI scan to rule out any of the nasties (doctors not realising or recognising that I feel this facial pain truly IS one of the nasties!). My scans have never shown up anything big, a few things to monitor but nothing of note. “Odd” because with my symptoms you’d expect to see something at least. “Have we ever tried you on anti depressants?”

I think you get the picture. And I’d like to state that I/we as a family, have never expected GP’s especially, to have all the answers, after all, they are general practitioners. But, it is truly disheartening and isolating when each of their suggestions following any results or discussions, lead them to suggesting mental health support, I have felt so many times that I have been doubted and disbelieved. Like a liar and a storyteller, and that is a very dark and lonely place to be.

If I am being completely honest, towards the middle of last year, I had almost resigned myself to the life I was living. I felt we’d knocked on every door possible of anyone who might want to listen or be able to help, and none of the doors had been opened. I didn’t bother my GP anymore, stopped Googling specialists and treatments and just thought, this is it. Life inside. I never in a million years expected that the situation could get even worse and I certainly hadn’t expected the lack of care I then received once again from my GP. To be at the age of 37 and having to hand over phone-calls to my parents because the conversations were so incredibly hard, broke me. To cry on the phone to your GP through pain and frustration and for your GP to simply ignore you…it’s beyond words; but for your parents to then have to take over the call and point out to them how unsympathetic and cold they had been…it just shouldn’t have to be that way.

One of my newest and biggest bug bears is when people don’t actively listen to you. I’ve had one face to face with my GP in the past few months since the increased severity. This was after I was given no option but to have a face to face at the surgery because, “you made it out to see the specialist, I’d you to come and see me.” I felt like I’d been summoned to the headteacher’s office! So, in we went and the appointment began and the GP started typing/looking up results/asking me questions/responding to my answers – all without looking away from her screen to pause and look at me. Once again, there were tears, I even leaned over as I was talking and she was typing as if to say, “HELLO! YOU MADE ME COME DOWN HERE, HAVE THE DECENCY TO LOOK AT ME.” But as with the phone call, my tears didn’t impact or distract her and she still didn’t look away from her screen. Zero empathy. Things had become so bad with communications and referrals and my treatment that I had run out of energy to deal with it all, so again, at age 37, my parents had requested a meeting with said GP and the practice manager. And I’d like to state again, this was never to argue or blame or complain (well, maybe a little), but just to plead for things to improve in order to help and support me. They highlighted again the lack of empathy, lack of understanding for how hard and painful it had been to get to out of the house and to the surgery and how disappointed they had been to witness on the phone-calls but also in the face to face the lack of empathy or active listening. The GP came out of that meeting to the waiting room where I was and thanked me for coming because she knew how hard it must have been and that she hoped we could now take steps to help me moving forward. I was grateful for that, but, why did it take a meeting with the parents of a 37 year old woman for this to happen? It’s just so unacceptable. And I say that because without mum and dad, I would have given up, and I know there are so many people out there who don’t have that support system and will have given up, closed their doors and resigned themselves to no hope and a life of neglect from the very professionals who should have cared for them.

I know I mention my friends and family a lot when I write my blog posts but I wanted to highlight once again, how truly important it is to have incredible people around you. Because, in this specific case, when I/we felt we have exhausted all avenues, my gorgeous friend Jo, mentioned about a pain management centre that had been set up for Long Covid sufferers at Guys and St Thomas’ Hospital. She had initially mentioned it incase any of the work they did there would help with my M.E, but, as she was reading, came across the part where in mentioned the centre had two facial pain specialists working with them! And long story short, this is how Dr Lambru came into our lives! Without Jo, my friend, thinking of me and wanting to help me, I doubt we’d have ever found him; GPs and other specialists had never mentioned him or the centre and he had never come up in my endless internet searches.

Initially we saw him privately because it was taking an age to sort and get referrals to his NHS clinic (for example my GP referring me for dental pain problems…yeah, I know!). But, last week, I had my third appointment with him but my first at his NHS clinic. I’m not going to go fully into my treatment plan yet as I’m still getting my head around the extensive list of options available, but I want to document it as I go. I know it may not be interesting to many of you but if by writing some more blogs it brings the centre and Dr Lambru to others attention that need help, it’s worth it.

I came away from the appointment feeling well and truly overwhelmed by the information and plan. But mainly I felt quite overhwlemed and emotional about the last few minutes of the appointment. It hadn’t even crossed my mind to ask the question because I’ve been told for sooooo many years that my facial pain is a unique case and felt so disbelieved. But mum simply asked him, “do you see any other patients that present like Hannah does?” To which he then talked about many patients exactly like me. Patients who have flown over from Belfast to him that present just like; who don’t respond to nerve medications, have widespread pain, have the red/burning flare ups, the eczema, the pain when exposed to the elements. Some whom he has actually CURED, many whom he hasn’t cured but has helped regain their lives to a level where the pain is managed and worked around.

And just like that, I didn’t feel alone anymore.

I felt seen.

I felt heard.

I felt believed.

Now, I have always been seen and listened to and believed by the people closest to me, that has never been in doubt, but it hit differently coming from someone medical. Someone whose field is facial pain and someone who helps people just like me. We have said for years now, that we just need that one person to show an interest. To use me as research, to want to find our what’s going on. And it seems quite likely that that person could be Dr Lambru.

Part of my CBT homework this year is to manage my expectations and to not pin all my hope on things. I am terrible for this, especially when it comes to my illness – counting down the days to my next appointment, and when they don’t go as I hope, feeling totally disheartened and drained of all the possible hope I’d attached to the day. I’m trying to focus on the daily successes, how I’m beating my pain monster by just getting up and getting on. And to see these appointments and treatments as ‘just another day’ and if something good comes from them, winner! But that is hard to do when you’re desperate. So, I do have my hopes pinned on one man and the potential treatment pathways, the difference is, in my mind, I’m not expecting any of them to work, I’m hoping one of them does…and as we know….hope, is everything.

Trapped

Have you ever sat in a room, staring out of a window and day dreamed about the adventures out there waiting for you? Or just sat watching the beauty of nature slowly go past; the cloud patterns, the sunsets, the birds, the insects, the small things in life that are so wondrous but often go unnoticed?

Well my velux window in the loft is something I treasure above a lot of things in my life. One small window that I can look out of from laying in my bed, in all seasons, at all times of the day and night. That one window reminds me that although my world is much smaller because of the restrictions of my health, there is still a big, beautiful world out there, patiently waiting for me.

Sometimes that thought taunts me, there’s so much out there that I long to see and experience, but oddly they aren’t the big things. I long to be able to stand outside in a heavy downpour, face up to the sky and feel the rain on my skin. To get swept up in the wind until my hair is tangled. To sit in the sunshine and soak up its glorious rays. To be somewhere outside, wrapped in a blanket, breathing in the fresh air whilst watching a sunset, instead of watching from the inside.

For the past three and a half years I’ve done a lot of watching from the inside. Watching my gorgeous godsons in my garden harvesting vegetables with my dad. Watching from inside as a family wedding photo is taken. Watching from inside as others enjoy the snow or the sunshine. Watching via photographs or videos of loved ones experiencing life to its fullest.

The cruelty of my facial pain is sometimes too much to comprehend. Even crueler that when it brings me to tears, the tears result in aggravation and burning in the following hours. It has stripped me from enjoying the simplest of things because everything has to be thought through and planned if I’m to leave the house. It leaves me with anxiety about how easily and quickly I’ll be able to get from the car to inside the destination (we’ve worked out I can do 30 seconds to a minute outside before the severe pain sets in from the elements. Less if it’s very windy/sunny/raining.) And then when I am inside the new place, where I sit needs to be away from any breeze or direct sunlight, out of the blow of any air conditioning or fan. All things you never really consider in daily life, the things you take for granted.

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The above part of this blog I started in August this year. 2023 has felt the toughest so far in this eight year “journey.” But none so tough as the past ten weeks. The facial pain I am trapped by, I’d come to manage and live with was only ever exacerbated by external factors: wind, water, sun, make-up, touch. Once inside, I was comfortable and able to put up with the irritating but not painful, constant pins and needles. However, in the past ten weeks, for no rhyme nor reason, the facial pain I usually only experience with external factors, became present when inside too. The only way to describe it is the pins and needles sensation is now like bubble wrap under my skin that is inflating and deflating constantly and painfully. Accompanied with flare ups of extreme redness and burning which can sometimes last for hours. I’ve lost my eyelashes again and have had severe eczema flare up on my face alongside swollen eyelids. Bar a few trips to appointments, I have been completely housebound. The exhaustion and insomnia is next level, my world is now smaller than it has ever been.

Once again, through a daily endurance test, it has confirmed that old saying; you find out who your true support system is when you go through difficult times. It goes without saying that the Green Team have been my rock. I find it difficult to put into words all they have done and continue to do to quite literally keep me going. I am completely reliant on them. I can’t even take the four steps out to our garage to put my washing in the dryer, I can’t do the short drive to pick or my prescription or take myself for blood tests. When getting me to the hospital for blood tests I have to carry a thick newspaper to shield my face from any ray of sunshine that may reach my face. But they do it all without complaint, with love and support and humour. They are quite simply, incredible. And then there’s my friends. I never take for granted that each and every one of them have their own challenges and lives to lead but my goodness, they don’t realise how special they are. The texts, sometimes just an emoji to show they’re with me, or a photo or video to make me smile or keep me in the loop.  The happy post, the care packages, the playlist compiled of calming music, the voice note catch ups, the unique advent created so I have a little joy to look forward to each day. Friends who take notes on my appointments and Google what certain words and treatments mean, learn about the medications and the side effects and the blood tests…the level of care and support has been next level. I could go on and on …it all means the world.

I’ve also been able to have more regular CBT sessions via Zoom, as I’m sure you can imagine, my mental health has taken a huge dive. How grateful I am for Mary. It helps that she’s known me for so long and therefore she knows how my mind works and what types of support I respond to. She set mum, dad and I some homework a few weeks back and at first I didn’t quite understand the method behind the madness but I’m starting to now. I thought I’d write about it incase anyone else would find it useful as it can be adapted for many a scenario.

It’s something Mary does for a variety of her patients, those with OCD, eating disorders or those, like me, with chronic pain. She asked the three of us to personify my facial pain and turn it into a monster. Be as creative as we wanted to but draw a monster that represents my facial pain. The idea being that the monster of pain is the one controlling my life. We had to name our monsters too, I’m sure if mum and dad have yet, but I named mine Joffrey – the most heinous TV character ever created from Game of Thrones!

Mum’s – the monster taking away the sunshine that I try to make & the red & black representing the havoc the pain causes.

My monster – a red, angry ball of redness that follows me EVERYWHERE! In bed, as soon as I wake up, in the water of the shower, the weather, in make-up.

Dad’s – Lightening bolt jolts of pain, into an angry, painful circle of a monster.

The idea is then to take back control from the monster by altering the images every time we feel like we defeat the pain in some way. I struggled with this to start with because I’m not defeating the pain, it’s there constantly. But Mary explained, it’s not about the pain going, it’s about the small, daily things I do in spite of the pain. For example, she asked me if there were days I didn’t feel like getting out of bed. Of course. But do I? Yes. So that’s a way I don’t give in to the pain monster. So I decided to alter mine by buying little gold glittery stickers that I’m adding to my monster when I feel appropriate, but at least one a day as a representation that I survived the day.

Having M.E and this facial pain has taken so much from me but I’ve always tried to cope with it the best way I can. But I must admit I feel like I’m struggling more than ever now. During the Covid lockdowns I found an odd peace that everyone in the world was in a similar situation to me, I wasn’t missing out on anything. Yet in the last ten weeks, I’ve been back in full lockdown and I feel like the world and life is passing me by. I feel so trapped by my own body. I’m in this limbo of waiting for one specialist to potentially help me and until then, as dramatic as it may sound, I don’t feel like I’m living, I’m merely surviving.Although it’s important to try and hold on to some hope, I must admit that can be challenging.

I try to remind myself daily of how lucky I am. To have the support system I have, to have a roof over my head, heating and running water and food in the fridge. I try to keep the light of hope flickering away and not let it completely burn out. Music has always been a huge help for me in all walks of life, I love a good lyric! Over the last few years of my facial pain and especially in the last ten weeks, there has been one song I’ve listened to over and over again. Partly as a release as it often makes me cry as I listen to the lyrics but also because it makes me think of the possibilities waiting for me, just like my Velux window. I almost play out a little movie scene with it (I’ve watched far too much Gilmore Girls/Dawson’s Creek and One Tree Hill in the last ten weeks!). In the movie of my mind, my facial pain is gone and as a celebration, I gather all my nearest and dearest when it is pouring with rain, and we head outside to dance in the rain and sing out these lyrics:

“Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten.”

– Unwritten by Natasha Beddingfield

It’s been a while…

It’s been a while since I sat at my laptop and wrote a blog post. It’s been such a tumultuous time, so much going on in the world, so many changes and because of that I haven’t felt like publishing a blog post. However, I had a lovely chat with a friend as she picked up a cake order a few months ago. She asked why I hadn’t published any blogs recently as she’d missed my reading them and when I said I had been nervous to as I hadn’t written for so long, she said, you really should write again, it’s always eye opening, interesting and educational. So, I thought, maybe I should.

As we do do throughout our lives, we live and learn. There are things that I am always a bit scared to write on here for fear of upsetting people or saying it in the wrong way. But then I remind myself that this is my safe space, it’s my truth and it’s always been about getting it out there to educate people on life with an invisible illness.

In October I will have been home and ill for 7 years and let me tell you, it truly feels like it’s been that long. And in all honesty, for some people around me, I think it feels that long to them too and not always in a good way. I have definitely felt the pain from some being ‘over it.’ At times, I feel like I am becoming more and more invisible in my own life, absent from it in so many ways. And then it dawned on me that by not writing my blog posts anymore, that’s another area of my life that I’m absent from. In a way, I’ve stopped advocating for myself and the M.E community that I hold so dear.

Therefore, it felt fitting to publish this post today, on May 12th, which is the Millions Missing and International M.E Awareness Day.

I am having to remind myself on a daily basis that I do live in my own bubble. A bubble that allows me time to think over the smallest of things and dwell on them. I can’t have the release of getting up and on with my life in the way others can to distract from things that happen. So, things that upset and hurt me, probably sting for longer because to me, they are much bigger. Losses feel bigger, hurt feels harder, sadness feels all consuming and moving on take longer.

Los is the big one at the moment. No-one likes to lose anything in life. Loss hurts. It cuts deep. This illness has taken so much from me and each time it takes something, I have to deal with that and reconcile it. Lockdown caused everyone to lose their freedom in many ways and that was so tough and yet it was nice because people gained an understanding in some ways of life with a chronic illness. However, here we are, lockdowns down and freedom day passed and I am still in my own form of a lockdown, like so many others. Limited by my facial pain and fatigue, having to consider every little thing as to if I’m able to go somewhere and do something. That in itself is exhausting.

I feel in a very precarious situation where I don’t want to lose any more from my life. It’s like I can’t afford to because I’m not in a position to go out and replace it. However, I am growing in strength. If something doesn’t add value to your life, makes you feel worthless, causes undue stress hurt and upset and makes you feel disposable, that is not something that needs to be kept or treasured. But that doesn’t mean it makes it easy. What is does mean is that it feels like my little bubble and world gets smaller. I’ve always been someone who lives in a world that feels big and open so getting used to ‘smaller’ takes some time.

The frustrations that comes with living with a chronic illness are also heightened. I can be in a room full of people and feel invisible, like I add nothing, like I want to scream. People who live with chronic illnesses may spend the majority of their time at home, resting, sleeping, pacing – but we do have lives. Lives that contribute to others and to the world. We listen, we read, we watch, we hobby – we can talk about more than our illness, so ask us. Don’t forget us. Show an interest, ask questions, you might be surprised by what we can and do, do.

I am in awe of the things that my online friends with M.E achieve. None more so than Anna, the Blue Sunday QUEEN! Once again, Anna trusted me to help her with the fundraising packs for the 2022 event and we went big! We made limited edition napkins alongside the 60 fundraising packs and everything sold out within 24 hours of their release back in March. It may not seem a lot to some, but to us it’s huge. We spend so much time planning, making and worrying about if they’ll sell, if people will be interested and for the second year in a row we had a cry at how much love and support we recieved.

This tea party means so much to me, it’s a day where the M.E community comes together to raise awareness and money for M.E. Seeing friends and family host tea parties, have fun but more importantly, show their love, support and understanding, it’s beyond words what that means.

Sunday is just around the corner but there’s plenty of time to dust off a tea set, bake a cake and brew some tea…and more importantly, donate some money for such a worthy cause. I have attached the link for the fundraising page for Action For M.E, the charity we support as a family. So if you can spare the cost of what you’d pay in a shop for a cuppa and a slice of cake, I’d be so very grateful.

http://www.justgiving.com/fundraising/bluesundayaforme22

Hopefully I won’t leave it so long until I write again – until then, bring on Blue Sunday!

Hannah

It’s the little things

This week saw me thinking about my six year milestone. Six whole years since I ended up in hospital, started to lose my hair and never recovered from glandular fever.

Six years is a long old time. It’s the same period of time I taught at my first ever school. In those six years of teaching, I developed my skills, taught 180 children, went on courses to learn new skills and climbed the ladder. I moved away from home and bought my first flat, I travelled and threw lots of infamous Halloween parties. I loved and lost, I laughed and cried, I had days out and days in, struggled for money and had several bad flatmates! I made the decision to move Dubai and spread my wings.

I also, like anyone who has their health, took for granted all the little things in life. I moaned way too much about way too many insignificant things. I sweated the small stuff and I do regret that, because now, it’s the little things in life that keep me going but that I also miss more than anything.

It can be really hard to stomach all the life changes I see in the people around me whilst I feel so static. So much has changed over the these past six years, sometimes I feel totally invisible from the world and from my life. I work hard to stay visible and do what I can to contribute to the world and to those around me. But at times that isn’t easy.

Over the past six years my illness has fluctuated and I’ve had endless hurdles to jump and navigate. The past 18months however, have been tough though, my allodynia in my face holds me captive, it’s robbing me of so much. I’m just not able to do the simplest of things and sometimes that takes me by surprise too. For example, the other week (before petrol shortages) I went for a little drive to fill up my car, but when I pulled into the petrol station and got out of the car, it was really windy. So windy infant, thatI realised I wouldn’t be able to stand outside for the length of time it takes to fill my car without being utterly crippled with pain. So, I had to get back in the car and come home. As I say, it’s the little things that seem so simple that I just cannot do.

So, here are the small things that I miss more than anything and that maybe next time you do them, could soak them in and live consciously in those moments for me, do them for me while I can’t….yet.

• letting my loved ones kiss me on the face
• having a hug where I can bury my face into my hugger
• standing in the sunshine, closing my eyes and soaking in the rays for a few moments
• going for a walk, in any weather
• letting the wind blow my hair around and not worrying how messy it’s making it
• putting in a pair of earrings
• wearing some make-up and feeling great
• going on little adventures and taking lots of photographs
• walking around Greenwich Market on a Sunday
• having a shower and letting my face soak in the hot water
• sitting outside
• filling the car up with petrol, even when it’s windy
• wearing a face mask

Actually I’ll pause the list here as there’s a story behind the ‘wearing a mask’ bullet point, one that I think is blog worthy!

I can’t wear a face mask as it’s too painful so I wear a sunflower lanyard for invisible illnesses. I still wear it now as if I could, I would still be wearing a mask out and about. I was out the other day on one of my first solo trips since shielding/lockdown/pandemic. It is taking a lot for me to do these trips but I’m making myself do them. I sat down in M&S for a little rest, plenty of room on the bench in the middle of the shoe section. Along came two daughters, in their early 40s, with the mum. All wearing masks and looking for somewhere for the mum to sit and try on her shoes. There was plenty of room for me, a gap and then their mum to sit, so I smiled and said, “she’s welcome to sit here, I won’t be long.” To which she replied, “I’m not sitting my elderly, vulnerable mum next to an anti vaxxer.” WOW! I’m afraid at that point my own mum came out of my mouth…”Pardon me?! I am double vaccinated and wear this lanyard for a reason.” To which she replied, “Those lanyards are a good excuse for anti vaxxers to get away with whatever they want to.” I stood up and politely thanked that ignorant woman for making one of my first shopping trips out so easy and without anxiety. Another example of how we should treat people with kindness because we never know what’s going on!

Back to the last few on my list!

• wear a hat and scarf and not worry about them touching my face
• having a fan on/air con on/window open in hot weather and letting it blow on my face
• not having to weather watch anytime I want to leave the house
• crying without tears burning my face
• being able to be a bit more spontaneous

This list is obviously just linked to my facial pain, if I linked in all things I miss that M.E robs from me on a daily basis, it would be one hell of a list! So basically, what I’m saying is, enjoy the small, seemingly insignificant things. Because the bigs things are great but sometimes it’s the little things that enable us to strive for and enjoy the bigger things in life so much more.

Have a lovely weekend everyone,

Hannah x

An open conversation

I feel like I need to start this blog with a little trigger warning as this post deals with topics about mental health, morbid and suicidal thoughts. 

During 2020 and continuing into 2021, there has been a huge emphasis of shining a spotlight onto mental health, and rightly so. 

The pandemic has shone a light onto the impact that many varying factors can have on someone’s mental well-being. I’ve written before about how our brains should be cared for just like we care for other parts of our bodies but that for some reason, if we need to medicate our brains because they’re struggling, there’s a stigma attached and an element of embarrassment and shame.

I have been writing in a separate diary over the past year as an activity to help me with my mental health and until now, haven’t felt strong enough to transfer some of my thoughts and feelings into a blog post. I wasn’t sure if me writing such an open, personal post was the right thing to do, especially as I am still learning to deal with things at the moment. Will it make people pity me, will people think I’m attention seeking, will it grow the stigma that M.E is a “psychological” illness? I guess there is a possibility for all of this but ultimately, I feel like it’s an important post to share, just like I have every other aspect of my life over the past five and a half years. M.E is a physical illness that has a huge impact on mental health; the complete 360 change it has on lives coupled with being under researched and underfunded leaves those with the illness feeling abandoned and alone. People living with M.E often feel afraid to speak openly about the impact it has on mental health and that’s why I, along with my families support, decided to write and post this blog.

A while back, I watched three documentaries on TV, one about Caroline Flack, one by Roman Kemp and then the Oprah interview with Meghan and Harry. As I was watching them, along with the heartbreak I felt for the people featured and their families, I couldn’t help but feel a deep sadness at seeing so many similarities being mirrored back at me.

Lockdown has been tough on everyone, we all have our stories to tell, we all know someone who has suffered. For me, it lead me down a path which was quite frightening. I’ve always been open about the fact I’m on antidepressants. Living with M.E. has had a real impact on my mental health. The lack of understanding and help from the medical professionals has left me feeling like I’m fighting a losing battle and antidepressants helped to level me out. However, during lockdown, those antidepressants started to lose their magic.

The buzz around mental health is that we all need to talk. But how do we start those conversations? If you really are in dire need of help, initiating that conversation feels like the hardest thing on Earth. I can’t tell you how many months I suffered in silence, not knowing how to verbalise how I was feeling to the people I needed to reach out to. Convincing myself that it was futile trying to reach out and talk because ultimately it felt like there were no answers or solutions to my situation. When those thoughts and feelings appear to be that big, reaching out and talking is not easy. 

I ended up on a downward spiral, not realising that my thoughts of feeling lonely, sad and helpless had seamlessly turned into thoughts of, it would be so much better for so many people if I wasn’t here anymore.  And all of a sudden, there I was, in a scenario of finding comfort in the thought that I would be helping those I loved, if my life ended. They wouldn’t have me as a burden anymore, they wouldn’t have to adapt their lives for me, they wouldn’t have to look after me, fill in forms for me, listen to my woes and comfort me. No more frustrating doctors’ appointments, no more researching specialists, no more endless talks about how to help and support me emotionally, financially and physically. I could remove all of that by simply removing myself. 

I was aware that I wasn’t really sending my usual responses to texts from friends, I was definitely quieter in myself and felt like I just needed my own space but equally was pretty good at putting on a smile, trying to keep busy and distract myself. On the face of things, I’m sure I would have appeared fine but underneath there was a deep hatred of myself and my life and I no longer felt like my contribution to life was of any importance.

Luckily, in the week where things were starting to bubble over, I had a CBT session booked in and it all flowed out. I guess, although I have a trusting relationship with my therapist, she’s still someone detached from my life whose job it is to listen to me so I didn’t feel like I was burdening her by offloading. She explained to me that she thought I was experiencing ‘morbid thoughts’ rather than suicidal thoughts because I explained I hadn’t seriously thought or considered how to end my life, more of, if I did die, that was fine in my head. However, there was clearly something urgent that needed attention because the lines between morbid and suicidal thoughts can blur quickly.

Eventually I was referred for a phone assessment (because…Covid!) at a mental health hub which, of course, has a story to it…somehow there is always a story to lighten these situations with me isn’t there? The assessment had endless questions, some leading back to my childhood but the one that ended in me telling the assessor he was talking absolute bollocks was this: he made the link that my brother is almost 7 years younger than me. He explained that in his experience, parents who have a daughter first and have a big age gap between children are often disappointed as they wanted a son. They try and love the daughter as much as possible but in the end, try for another child and if they have a boy, which is what they always wanted, they give all their love and attention to the boy and the first child and daughter gets pushed aside and feels unloved and that’s where a lot of feelings of rejection come from…..YES! THIS IS WHAT A TRAINED PSYCHIATRIST SAID TO ME! I kid you not. The assessor didn’t react kindly when I told him he was speaking absolute bollocks and I’d like to move on to the fact I have a chronic illness and needed some actual help!

Anyway, eventually I’ve ended up on an extra anti-depressant added in top of the one I already take. They help for sure, and I know I am in a much more level place but admittedly I am still struggling. I still find it hard to talk about it, life seems very overwhelming and scary and daunting a lot of the time and I’m still in a position where I struggle with that because there really isn’t a whole lot that can be done to improve that. I also find myself often brimming on the verge of tears which isn’t helpful if you need to talk and explain how I’m feeling and what I’m thinking.

But circling back to the documentaries I mentioned earlier, I watched them and each of them hit home for different reasons. Listening to Carline Flack’s mum, sister and friends was heart-breaking: seeing the impact of her no longer being here showed me that by taking my life, I would eradicate my own pain but leave the ones I love the most with more pain and changing their lives forever and not for good. But hearing how Caroline never reached out and never asked for help…I got that too, having been that low, I can totally see how when life feels that overwhelming, you can only see a few options. The British press cornered Flack into blurring those lines from morbid thoughts to suicidal thoughts to actioning them. And that’s why I felt so sad for Meghan Markle too – how dare online trolls and “celebrities” like Piers Morgan decide that she was ‘making it up’ to get sympathy. This is exactly why there is a stigma and people don’t talk because if we do, we are seen as attention seeking or lying. 

And then watching the Roman Kemp documentary, that made me start to think about writing a blog because he spoke about the importance of sharing our stories and experiences because we need to end the stigma. We need to openly talk about the places mental health can take us and by sharing our experiences, we may just help someone else in that situation.

I know what I am writing here seems very bleak and worrying and it is, but I think it is also key for you to know that sometimes, people who are on anti-depressants can have days and weeks or months and years when we are okay! We don’t always want or need to talk about our situation (s) and sometimes distraction and pretending things are okay is the best way to be because sometimes faking it until you make it is the best way forward. I can be my own worst enemy and not openly ask for help or initiate conversations and struggle alone but equally sometimes I am perfectly fine.

Deciding to post this blog now seemed like the right time as I’m approaching my 35th birthday. There have been times in the last year when I genuinely didn’t think I’d be seeing this birthday and equally didn’t want to. Times when I found comfort in the fact that I may not have to go through another milestone whilst feeling so sad about all the things I haven’t experienced and may never get to. However, I am now starting to see my 35th birthday as a milestone I will be reaching and I will be experiencing with all the people I love and who love me. Yes, I am still carrying so much sorrow and pain attached to so many things that I can’t really go into but the difference is, I can acknowledge these feelings but still want to exist. I struggle so badly with not knowing how on Earth I get to move through all of this but then, who does? I am so very lucky in so many ways and this birthday is one to celebrate and one to acknowledge.

M.E is a tricky illness on so many levels and I guess lockdown has impacted me in the sense that I will often offload to my friends or my brother when it naturally comes up in conversation. I couldn’t or didn’t feel comfortable doing this during lockdown via Skype or Zoom, over the phone or text, those types of conversations, I felt, needed to be in person. Being single with M.E means I also don’t have that partner to share with, to confide in and lean on and that’s tough too. Now, don’t get me wrong, as I’m sure I mention in almost every blog post, my parents are the greatest but having this conversation to their faces, as my parents, the thought alone of sharing how dark my thoughts were, was too upsetting because I knew how it would impact them and make them feel. Especially in lockdown when they themselves couldn’t escape the house, talk to their friends or have the release of swimming and golf to use to deal with the “home/daughter” situation! And at this point, I’ll say it again, talking about mental health is not easy. Starting that conversation is not easy. Dealing with the outcomes of those conversations is not easy. And I still don’t know the best way forward or how to appropriately deal with matters of the brain.

I suppose the reason I’m writing this blog is for a few reasons. One, if you don’t feel like you can reach out and talk to anyone, sometimes writing down how you feel helps or reading other people’s experiences let you know you aren’t alone. Two, there is help and support out there. Medication can and does help if you’re on the right dose. I’m not ashamed to be on them but equally I struggle with the idea that it’s medication that keeps me buoyant and that if I wasn’t on it, my depression would be all consuming and that makes me sad. Three, there might not be solutions to your problems but finding a way to somehow share and talk, it does help and it does lighten the load.

And now, although things still seem quite heavy and never ending, I try to focus on the reasons why I am here and what I contribute to people’s lives in a positive way rather than convincing myself of the alternative. The mind is such a powerful beast, it’s so scary how it can persuade you that your friends think you’re boring and not worthy of their time, how you’d be better off dead than alive because you’d free people of the stress and strain of their relationship with you. But then I am also realising what a beautiful thing your mind can be with the right nourishment, being kind is so important, not just to other people but to yourself. And I guess that’s what I find hardest, learning to like the person I am and the life I lead with M.E, learning to be kind to myself and not mentally bullying myself if I can’t do what I set out to on any given day. With M.E there are many things that my mind wants and can do but that my body simply can’t and that mis-match is a daily battle.

I don’t have all the answers, I still very much feel like I’m slap bang in the middle of my mental health “issues” and it’s a daily slog to keep myself balanced. Coming out of lockdown feels a hell of a lot tougher than it felt going into it, my life was already on a type of lockdown but coming out and seeing people starting to return to a certain degree of normal, that’s tough. It’s like being left behind or not included in a massive party that everyone else is enjoying. And of course, there are some wonderful elements to lockdown easing, being able to have garden visitors again is just wonderful. But, as always, for us spoonies, it’s the reintroduction of pacing. Pacing that we haven’t had to do for the past year. I always knew human interaction wore me out more than most activities; active listening, the hubbub of lots of people talking – it’s the sensory overload that does it for me. 

So now, it’s about having to think carefully about what I do within a week, if I have visitors, I need days either side to rest and I may need longer than that. Having to spend time thinking about how to balance seeing people which lifts my spirits with taking on orders, I simply can’t do it all. And then there’s going out. The anxiety I feel about that is high. Partly because I have only left the house 9 times in a year so the outside would feels quite daunting but also because going out uses up a whole different set of spoons. Getting up, dressed, out, travelling, considering if I can actually be outside because of my facial pain and the sun/wind etc. Activity time whilst I’m out, travelling back and then getting home. The idea of having a change of scenery and being elsewhere is utterly wonderful, the reality is vastly different.

They’re considerations that all greatly impact my mental health. Knowing that seeing people and going out will be a positive and lovely thing to do but equally knowing that the planning and anxiety surrounding and potential fallout from it, well, it’s exhausting. It’s a continuous circle of thoughts that I haven’t missed one bit. But, it’s another hurdle to jump and one that will be taken in slow, steady stages and that’s ok. At my own pace, in my own time, I’ll get there.

If you feel you are struggling and need to talk to someone detached, here are some organisations and numbers you can use. Please use them and please know you’re worthy of that help.

Mind: 0300 123 3393 or text 86463

The Samaritans:  116 123

CALM: 0800 58 58 58

Young Minds Parents helpline: 0808 802 55 44

Hannah x

Pins & Needles…

Something that I’ve written about a few times is the pain and pins and needles covering my face and scalp. It’s been the best way I could describe them but the phrase, pins and needles has never seemed to explain the severity of what I’ve been experiencing.

My first experience of them was a horrendous new symptom. The tingling began just before I started to lose my hair and gradually spread down my face and neck. A constant burning, tingling sensation was made worse by wind, make-up, earrings, hats or scarves. At times they were manageable and I was able to be outside and try and bear the sensation. But it was affecting many aspects of my life and along with hair loss, furthered my lack of confidence.

I saw countless doctors and even a private neurologist. I tried several different, nerve targeting drugs, I tried patches on my head, had scans and tests but ultimately no doctor could get to the bottom of them. They were invisible and was told to just hope they would go away. I was told it was paresthesia which essentially, is pins and needles.

The pain would get so bad at times; once I even took myself to A&E I was so desperate. I waited and when I was eventually seen, within five minutes I was out again, having been told that if a neurologist couldn’t diagnose, an A&E doctor wouldn’t be able to. Sorry, but go home, we can’t help you.

Then, I had my second bout of shingles and was on a course of anti-viral tablets. One morning I woke up with the most horrendous ringing in my ears, followed by what felt like my ear drums bursting, and, just like that, the pins and needles dissipated. Gone. Just like that. I made a doctor’s appointment to check my ears as I was convinced that the burst had caused some damage, but no, nothing, and again was told, be happy they’re gone, don’t question it.

I then had a blissful twelve months without them. Until early November 2019, I was at a very low ebb, a bad M.E flare up and I could feel them creeping back across my face. I didn’t tell anyone to begin with, it was too crushing to discuss and I hoped they would go. But over time, they got worse, much worse than before. Lockdown 2020 arrived but in all honesty, regardless of lockdown, I’d have still been locked down. They are so bad I can’t lay my face on a pillow, the sun or wind is so excruciating it brings me to tears. Showers are having to be quick and with as much of my face out of the water as possible because it feels like electric shocks under the water stream. Hugs from loved ones hurt. When friends come for socially distanced visits in the sunshine, I have to sit inside.

I honestly can’t explain in enough words the pain they cause.

Gradually, a combination of things led mum and dad to be worried enough to reach out to my GP once more in desperation. I signed the letter but honestly expected nothing. They couldn’t and didn’t help before. A top neurologist ran out of options. A&E couldn’t help. What would be different now?

Well, it seems a lot can be different. I had a phone consultation a week ago and my GP asked, had anyone ever mentioned Trigeminal Neuralgia to me? No. No, they hadn’t. Well my goodness, if you Google it like we did, it explains my symptoms and experience to a T.

“Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.”

“Trigeminal neuralgia is usually caused by compression of the trigeminal nerve. This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.

The compression of the trigeminal nerve is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.”

It is a very rare, chronic illness that affects only 10 in every 100,000 people in the UK. If you have A Typical, the type that affects the entirety of you face, it’s even rarer…I mean, it would be me wouldn’t it?! What was even more interesting was the fact that the symptoms can disappear, a form of remission, for several weeks, months or years but can then be triggered again and return with a vengeance…another tick to my experience.

Granted, there are no tests that can show this up, it is diagnosed by a patient who explains their symptoms; I still find it staggering that it’s taken five years for anyone to have made a link.

And here’s the good thing, although there isn’t a cure, there are treatments to try! I have started a low dose of anti convulsant medication..I’ll let the NHS explain it for me…

“An anticonvulsant medicine called carbamazepine which is often used to treat epilepsy, is the first treatment usually recommended to treat trigeminal neuralgia. Carbamazepine can relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to transmit pain messages.”

Over time, I will be building this medication up but it has to be done slowly. The side effects I’m experiencing already aren’t much fun – unsteady on my feet, even more fatigued, feeling like I can sense my brain pulsing in my head…it’s very bizarre but as always, I will try ANYTHING. And the good news is, if these don’t help or continue to not agree with me, there are some other options – including surgery to open my skull and remove any blood vessels that are compressing the trigeminal nerve!! (Really don’t fancy this option so if you could keep your fingers crossed for the drugs, I’d appreciate it!)

I’m still learning about this condition. I can’t tell you the relief that I have a proper name for it: pins and needles always seemed so flimsy and never conveyed the pain that riddles me on a daily basis. But now, I don’t feel like I’ve been imagining or exaggerating the feeling. In my research, it’s described as one of the worst pains an adult can experience – so it feels like I am justified in having been locked down, not worn make up, turned down trips out, not enjoyed a single minute of the sunshine this year..it is real and it is recognised by medical professionals.

I’m publishing this blog today because apparently October 7th is Trigeminal Neuralgia Awareness Day, haha I am chuckling to myself because I really don’t want have another string to my bow in chronic illnesses to raise awareness for but, I know so many of you have followed my “journey” and might find it as interesting as we have.

So, this is just the very beginning of trying to treat them. I will keep you updated and let you know how it all goes…I mean, skull surgery would make for a great blog post wouldn’t it?!

Keep safe and well,

#hairyhannah

Lockdown

2020 is not how we planned it, is it? Not one person could have predicted how this year was going to go and, let’s be honest, I doubt many of us can predict how each week is going to pan out at the moment!

Lockdown 2020 taught many people many things. We were all forced to stop, take a rain check, have more of a work life balance, take time to check in with family and friends more often, play games, enjoy nature, take up new hobbies.

For some, and what I’m focusing on today, it prompted them to have a deeper understanding of what life with a chronic illness is like. Having restrictions put on their lives. Having to cancel holidays. Having to cancel birthdays, social gatherings, concert tickets…the list goes on. Even the wonderful Miranda Hart spoke out on our behalf!

At first, I took real comfort in the fact that for the first time in many years, I WASN’T missing out on things because no-one else was doing anything that I had to miss, or cancel at the last minute. I didn’t have to feel that pang of disappointment in missing out or being left behind. Everyone, on some kind of level, was experiencing what my life had been like and that made my daily life, selfishly maybe, much easier. Of course, I really did feel for everyone because I know what that feels like but of course there was always that element of, once this is over, you’ll absolutely be able to do all of those things and it’s important to remember that the majority of the things you’ve cancelled, haven’t been cancelled, just postponed.

But for me, this year, this lockdown has become one of the toughest times since I’ve been ill. The hidden aspects that people can’t see have been the worst ever. The pins and needles that I flippantly mentioned returning have been worse than ever. They’ve become what feels like a prison sentence. So excruciatingly painful that I have only left the perimeters of my home 5 times in over six months and those times have only been for short drives and home again. I haven’t even been able to sit and enjoy our garden. I can’t bear a mask on my face but I don’t feel safe without once so that leaves me stranded too. I have, quite literally, been inside my home for six months. The one time I tried to hang my washing out in the sun, it brought me to tears. The sunlight on my skin feels like molten lava. My sleep is worse because if I turn over and have pressure on my skin, it’s like someone has grabbed my skin and pinched every part with all their might.

And because of this, I’m afraid to say I have become a little bitter. Lockdown eased and some level of normality has resumed for many. A different normal but a normal that’s more fun and social. Only now, I see my little community online feeling battered by this because, oh how quickly some forget. When the whole of society was in lockdown it was easy to relate. To feel sorry for. To empathise. To find time.

For me and for many like me, we are still confined to our homes. Yes, I am terrified of covid, not because it could kill me strangely enough, but for the gut wrenching fear it could make my illness worse. It terrifies me that young people, my friends, could get it and have their lives changed like mine has.

But regardless, covid or not, I still wouldn’t be able to resume my life before; pins and needles for one, but on another note, covid has set me back by what feels like years. Because I haven’t seen people, socialised, been out anywhere, the fatigue is more plaguing than ever. I’m quite good at covering it now but I am well aware that I am beyond irritable a lot of the time, I’m not able to wash my hair and shower as often (dry shampoo is my new best friend). My pacing is having to be to the extreme. Whatever I do, I am doing at home, typically I am up and out of bed for roughly 9 hours out of 24 and within that I rest every afternoon. I pace my activities, typically without any music or television because my brain fog and concentration can’t cope with the overload. Having to meticulously plan out my week – if I’m having visitors, can I bake that cake. If I make that bunting, can I see that person?

Life. Is. Hard.

I have never felt so alone. So isolated.

Tomorrow, Monday 5th October, marks five years since I had the asthma attack that sparked all of this. It seems almost impossible that five years have passed, impossible that I am still so far from where I want to be.

Contrary to how this blog may seem, I am not a jealous person. I am not a negative person. I am just a desperate person, someone who is literally treading water to stay afloat. But as mum has pointed out to me, no-one ever gets to see this side of me because if you come to spend time with me or text to check in, I’m not the type of person to moan or complain or say woe is me. I’m not going to harp on about my problems and feelings because I know everyone has them and there are so many much worse off than I am. I will make you cups of tea, sit and listen to you, smile and bring you treats. You won’t see the before and after effects. Plus, I haven’t written a blog in a while which tends to be my outlet and way of keeping people updated and aware of what’s occurring.

And I have to, and do, remind myself of how lucky I am, because, as always, my life buoys have been my lockdown buddies; my mum and dad. My constants. The ones who hold me up, make me laugh, hear me cry, see my pain, feel my frustration and take it all on board even though there is quite literally nothing anyone can do. And that must be beyond difficult for them, to feel helpless and I hate that I do that to them. Nothing is easy.

And therein lies the fear. Everyone kept saying during lockdown and even now, “it would be so much easier if there was an end in sight.” And of course, yes it would. But, regardless of how long this goes on for, social distancing, mask wearing, hand washing, life postponement, it WILL all come to an end. But for me, and many others like me, we will still continue to not have an end date, and that is utterly soul destroying and at times, unthinkable.

So, we will keep smiling and keep battling and being our own self advocates and keep hoping that one day things will get easier.

But if you aren’t in lockdown anymore, try and hold onto what it taught you. It’s a life lesson we hopefully won’t ever have to live through again but could influence many generations to come.

#hairyhannah

Personal but important

This is is the big week amongst the ME community, we’ve had the international awareness day, Millions Missing event and Sunday is the Blue Sunday tea party.

Each year I tend to write a blog post to do my bit for raising awareness for an illness that has turned my life upside down. However, this year I felt that whatever ideas for posts I had, would be the same as I’ve written before.  However, for a while now there has been a subject matter that I’ve wanted to write about, something that you wouldn’t necessarily consider someone with ME would have to factor in. It’s deeply personal but something that I feel is important to share.

Before I plough ahead, I just want to put a little disclaimer in here that although I know many people will want to share experiences, advise and give me words of wisdom, I really would appreciate no unsolicited advise on this one. This is a process I’m wading through and I’m fully aware there are options and nothing is set in stone, but for now, this is where I am.

Children. I adore children, that’s one of the main reason I went into teaching. I love watching them grow, learn, laugh, interact and experience the world. And with no surprise, I have always wanted to be a mum, it’s something from an early age I knew I wanted, it’s in my very being.  I wanted to have my own children to nurture and love and care for. To have a family unit like the one I was brought up in, special and unique.

When I was first diagnosed with ME, I didn’t think far enough ahead as to how much it would change my life; in all honesty I was ignorant to how long I could and would suffer with it. But, as the years have rolled by and as the steps I take continue to be small but significant, I have started to think further ahead. I found my birthday this year particularly hard. For some reason 34 slapped me round the face. Mid thirties. Not working. Living with my parents. No more input or avenues to explore with the medical professionals. I’m not in a place to date or meet people, I can’t plan that far ahead and let’s face it, dating someone with a life like mine really isn’t that appealing!

So that then led me to think about children. It’s not just the fact that I’m getting older and my biological clock is ticking, it’s more that I have to consider how my body would cope with it. Firstly, the impact being pregnant could and probably would have on my body and illness could be catastrophic – the possibility of getting through pregnancy and then being bed bound and unable to be the mum I’d want to be, is and has to be a real consideration. And then there’s actually being a parent – there is no way I could effectively pace myself the way I know I need to, if I had a child.

Now, I know what many of you will be thinking; there are different ways of having children and I agree, adoption and surrogates are all brilliant options and ones I’d never rule out. The main factor for me is being the mum I’d want to be. Not having to worry that if I take my child out for the day, that I wouldn’t be able to parent for the days, weeks or months to follow. Personally for me, that feels like such a selfish thing to risk.

I also know that there are many mums and dads out there with ME who manage their illness and parenthood brilliantly. That ME struck after becoming parents when they had no choice but to find a way through and do it with utter brilliance and strength. But like I said at the start of this blog, these are my own personal wonderings and ramblings, at the stage of life I’m at currently and I have no specific opinions on what anybody else chooses for themselves, everyone has to follow their own path.

I also know that you never know what’s around the corner and it is always important to stay hopeful. However, I have also learnt that it is important to be realistic and to work through different things that present themselves. I almost need to come to peace with the fact I won’t ever have children, work through that new level of grief that, if I’m honest, is all consuming and overwhelming.

I also remind myself that I am very lucky to be surrounded by friends whose children are huge parts of my life. I take the most unimaginable joy from being able to watch them grow and be a part of their lives and count myself as lucky to be able to do that. The excitement and joy I have for them, and my friends in the future that become parents, is unbridled. It’s funny, there is no jealousy there at all, yes, of course there are pangs of how I wish I was in that position but I am beyond privileged that my friends want me in their children’s live and hopefully I can have an impact on those little people and be there for them as they grow.

I am also aware that my situation is just one of many out there as a reason why I may not have children. Society doesn’t like to shine a light on the tougher subjects of becoming a mum, miscarriage being one of them, and I felt like this area of ME is hardly spoken about at all, yet I know many amongst the community feel it, and feel it deeply.

Babies bring people together and for me, that is what breaks my heart the most. Not the loss of not having a child for me, but not having a grandchild for my parents, a niece of nephew for my brother, godchildren for my best friends. Not being able to make all of those memories and fulfil my dream role in life. Not being able to see that as part of my future, makes my future even more unclear for me. It’s making me re-evaluate my in purpose life and the goals and dreams I set for myself. It feels like the biggest thing that ME could steal from me and is the hardest thing to get my head around. I know I can’t be certain about anything that lays ahead, but this is just something that I’m grappling with at the moment and when weighed up, was something important to expose during ME awareness month.

Please, please don’t feel you need to comment or show sympathy, that is not what this post is for. It’s my own personal thought process and an element of chronic illness that people may not have considered. Awareness is key. Funding for bio medical research is even more key. So, this Sunday, please join in with Anna’s Blue Sunday Tea Party and help raise money and awareness for such a worthy cause. I will post the Just Giving link below, all you need to do is have some tea and cake on Sunday and donate what you’d pay in a shop for it – easiest and tastiest fund raising you’ll ever do!

http://www.justgiving.com/fundraising/annaredhsaw2020

Keep safe and well,

#hairyhannah

 

Blue Sunday 2020

Back in 2013, the wonderful Anna from ‘M.E. myself & I’ set up a fundraising event called Blue Sunday.  I’ve thought about the best way to explain it to you all but in the end, Anna’s words from her blog seemed the way to go:

“As M.E. Awareness month (May) was approaching in 2013, I started to feel that something was needed to commemorate it. As an M.E. sufferer I am so restricted by my ill health that the ‘conventional’ methods of fundraising, such a running a marathon, weren’t at all appropriate. The success of my virtual birthday party had me hoping I could do the same again as a fundraising event.

So the ‘Blue Sunday’ tea party was born. I invited friends and family to join me online again, only this time I was well enough to have a select few join me in Real Life, for afternoon tea. I asked for small donations of the price people would expect to pay for a pot of tea and a slice of cake in a coffee shop. I uploaded photos and videos of the little event being held at home so that even those stuck in bed on the other side of the world could join in online.

The idea has since been adopted by The ME Association as their official annual fundraiser (Go Blue for M.E.) and I was incredibly moved to receive nominations for a JustGiving award and a WEGO Health Activist award.

‘Blue Sunday’ is now celebrated internationally with other sufferers hosting their own tea parties both online and at home.”

This year, for obvious reasons, Anna can’t host the ‘real life’ tea party and so the virtual tea party has become even more important.

Many of you reading this and who have read my posts in the past may now have a deeper understanding about some of the aspects of living with M.E. Being isolated and housebound. Feeling lonely and left out of society. Not being able to work and contribute, having to cancel plans that you were looking forward to. And sadly, I think many of you will be finding this lockdown much harder than we are because we are used to finding things to occupy us at home, used to spending days, weeks, months and even years trapped within our homes, we are used to relying on people to communicate with us so we don’t feel left behind.

It’s not easy. It isn’t fair.

So, this year for M.E awareness month and to support Anna, I would love for as many of you as possible to join me, Anna and the M.E community at our virtual Blue Sunday tea party. The date is Sunday 17th May…put it in your diary NOW! 

Make it fun;  dress up in something blue, paint your nails blue, make some blue bunting and play some Blue themed music. Then, bake or buy something yummy and sit down for a mini afternoon tea. Take a photo and share it with us by either sending it to me so I can post or simply tag me into your photos so I can share them with Anna. Use the hashtag #bluesunday

And then, most importantly, donate. We aren’t asking for anything big, simply a donation of what you’d pay for a slice of cake and a cup of tea if you were to go out and treat yourself.

Anna’s just giving page link is:

http://www.justgiving.com/fundraising/annaredshaw2020

This is a really strange and difficult time for all of us at the moment but it’s nice to think we can all come together for a good cause with a deeper understanding of chronic illness and how it changes and affects so many of us.

Keep safe everyone, and thank you for any support you can give,

#hairyhannah

 

 

 

Self Isolation

If you’re like me, you’ll be feeling like you’re living in a movie at the moment. Empty streets; the West End closed; panic buying; isolation; it feels very unnerving and bizarre.

I spent a lot of last week sorting through a variety of feelings and I still can’t quite properly explain and find the words to express that. I think as part of the chronic illness ‘community’ there was an element of – welcome to our world. Now that does sound harsh but bear with me.

There is a HUGE section of society who live their lives behind closed doors. I can’t speak on behalf of everyone here: this is my blog, my thoughts, my opinions. But I do know a lot of people who have ME, cancer, POTS who haven’t been shaken to the core with the news of potential self isolation and social distancing because we’ve been doing it for years.

Seeing droves of people take to social media to ‘grieve’ the loss of holidays, cancelled social events and panicking about what the hell to do inside your house for a prolonged period of time angered me. Now, I’m not a cold hearted cow: I totally get how upsetting it is to have to cancel holidays and miss out on plans but that is because that’s what I’ve been doing for almost five years now. Five years. Not seven days, two weeks or twelve. Five years. And there are many people who have been ill longer than me. So we empathise completely.

Miranda Hart took time on Twitter to silence people and make them think for a second about those of us in society who love with this daily. Once this all calms down and is managed, you will all go back to work, life, re-book cancelled plans, meet at the pub for celebratory drinks. For me, this won’t happen, I will have to continue pacing myself, self isolating and coming up with alternative ways to live my life.

The thing that got to me most though was this. Doctors putting things in place to help people cope with self isolation. Ensuring they have ideas of things to do, telling us to check in on each other, making sure doctors are accessible with information and help. Employers doing whatever they can to support their workforce to work from home. This is not the experience of the majority of us in my situation. I am now not under any medical professional apart from my GP. There is no help, no advice, there are no guidelines. We can’t get jobs that will support us working from home, even though campaigners have been working tirelessly for years to get these rights for us.

And then there are the people who aren’t following the advice to isolate where possible because it doesn’t affect them. They’re fit and healthy, they aren’t at risk. Yes, if they get this, they will feel poorly for a few days and then will more than likely recover and be fine. But, what if you came into contact with someone who lives with or cares for someone who IS at risk? You can be the carrier who spreads it the the vulnerable. And that’s me. That’s my mum. That’s my uncle. That’s my next-door neighbour. That’s my brother’s mother -in -law. They’re the people who I love, care and worry about.  So, don’t be selfish, stay at home when you can.

So, I am now drawing on my experience and have put together a list of things that I have done at one point or another over the past years that you can do over the coming days, weeks or months. Take the time to re-set.

• Pick up the phone/skype/facetime friends and family or the elderly in your community.
• Sign up and train to be a telephone befriender for Independent Age or Age UK.
• Every day, get up, have a shower get dressed.
• Cook. Try our a new recipe, play Ready Steady Cook with the random cupboard ingredients you have.
• Have a virtual dinner party with your friends.
• Tidy your cupboards, bookshelves, drawers. Make up charity bag donations or sell bits on e-bay.
• Sort though your photos. Make photobooks.
• Do a puzzle
• Listen to a podcast
• Watch films
• Binge a box set
• Play a game
• Make up a game
• Do a quiz
• Read a book
• Do some colouring in
• Do a suduko
• Watch YouTube tutorials and learn something new
• Bake
• Do some guided meditation
• Have a pamper session
• Have a bath
• Sort out your make up bag/clean your brushes!
• Give yourself a manicure/pedicure
• Write a diary
• Write a story
• Paint/draw
• Sew/knit
• Get crafty, order a home delivery form Hobbycraft
• Make lists of things you want to do this year
• Make a travel bucket list
• Take photos – your house/garden/sky/sunsets – share your experiences
• Start a blog!
• Go online and send cards to your friends, Moonpig etc are still up and running
• Research your family tree
• Limit your screen time/reading the news – that’s not good for your mental health.
• Spread some happiness

We are so lucky to live in a time where there is so much at our fingertips. Believe me when I say, I know how hard and frustrating it is to be stuck inside. I know what it’s like not be able to go out and socialise. I understand the loneliness ands isolation. I am not belittling this situation, it’s scary but we can all help each other and hopefully once this is all over, the world will be a little more sympathetic and empathetic to those of us who will continue down this path.

Be kind. We all need kindness right now.

Let me know any extras we can add to this list!

#hairyhannah