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An open letter to my GP

You have been my GP for over 25 years, you know me and my family well and have been there since the start of my illness in October 2015.

We haven’t had the smoothest relationship since my diagnosis of alopecia and ME/CFS, at one point you even rang me up to apologise about your conduct and approach to my condition. You apologised and promised that you would use my case as a learning curve so that any other patient that presented with my symptoms would not be treated the way I was.

After this, I didn’t see your for a while as I was seeing specialists and have been having CBT with the most wonderful, caring and understanding therapist I could have wished for. But, in seven sessions, my NHS input will finish and if I want to continue with CBT, which I do, I will have to pay for it privately. But, myself and my family also felt, in a way, that it’s the NHS washing their hands of me, abandoning me, because they don’t know enough about ME. So, that is why today, myself and my mum came back to you.

We accept that you won’t have all the answers or know everything about ME. As a teacher,  I never knew all the answers but if that was the case, I would research, refer and call specialists so that I could help and support the parents and children in their darkest hours of need to the best of my ability. I would never do what you did to me today.

Today, you sat in front of me and my mum and said that you had no time but that I had all the time on my hands to research, make phone calls, request tests and go privately.

Let that sink in for a minute. You have no time for me.

Now, let me ask you to digest this. Yes, I have time. But it is not my choice, it is not a holiday. I have a chronic, hidden illness that has robbed me and continues to rob me of my life. Myself and my parents have researched, spent money, done everything we can. Every test and specialist I have seen has been as a result of our suggestions to you. But today, we came to you because we needed help and support. We have hit a wall and needed suggestions of people, places, trials or just a simple offer of, “let me see what I can find out and I’ll get back to you.” Instead, you quite simply said you have no time.

Social media has given me a wealth of knowledge about my condition. I’ve heard about countless heartbreaking stories of suicide from patients who have received no help or support, who have simply been left to hope and deal with the cards they’ve been dealt. I’ve read of people no longer having the strength or support networks around them to keep fighting so just live with this illness, not having much of a life. I have never given up hope, yes, I’ve had my dark days, but I’ve always had the hope and belief that doctors and specialists would also not want a 31-year-old woman to just accept this is her life. But today, you changed this. Today, you knocked me down and I felt bereft.

At no point today did you show any empathy or understanding. You commented on my weight several times and yes, I know it is an issue – partly due to the ME, partly because of the drugs I’m on and partly because it’s been an issue for a while. You offered no suggestions of help or support, you asked if I was pushing myself to exercise, suggesting GET – by doing this you further emphasised your lack of knowledge of ME and your lack of bedside manner.

I ask, if you will, just for a minute to put yourself in my shoes and think, could you live like it for a day? Not just with the physical and hidden symptoms but with the loss of work, social life, income, and independence. And then consider how you’d feel after living that way for two and a half years.

I will pick myself up again, my family and friends will make sure of that. And we will keep on fighting. But as my dad said, we now know the NHS has abandoned us and we will have to go forward privately. You have no idea of how that feels, and I hope you nor anyone you know and love ever has to, because believe me, it is a horrendous prospect. It’s lonely and scary, it’s worrying and frustrating.

I would assume that like teachers, you have training each year to update your knowledge. May I suggest that you put forward ME/CFS as an area for all doctors at the practice to learn about, because the thought of another member of our community leaving their appointment feeling like I did today, leaves me heartbroken.

Yours sincerely,

Hannah

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What would you do if you were cured tomorrow?

Recently I replied to a tweet from @TomKindlon who posed the question: “What would you do if you were cured tomorrow?”

I answered quite quickly with the things that immediately sprung to mind, but I must admit, that question lingered with me and the more I’ve thought about it, the more things I’ve added to that list. It’s a hard one to contemplate because in reality, I am not going to wake up tomorrow cured. I am still ill, it is still on going, there is still no cure and the road ahead is still a long, frustrating, upsetting one. However, as with a good book or film, escapism from reality can be a release and I found it nice to dream for a while. So I thought I’d share with you my imagined “day in the life” if I woke up cured. (I’m also assuming that covers alopecia too and I’d have glorious locks again!)

I’d wake up in my own house/flat that I own because I can work full time again. I have a long shower where I’d use a hot oil treatment in my hair and luxuriate in shampoos and conditioners and revel in the fact I wouldn’t need a rest after my shower or at any point in my day until the evening! I’d style my hair, carefully apply make up, look at myself in the mirror and think, yes, today is a good day! I’d be able to choose a decent outfit because I would no longer be on tablets that caused weight gain and I’d be able to exercise because I don’t have pain or fatigue anymore to hold me back.

I’d then complete normal jobs around the house before jumping in my car, cranking up the radio and driving to meet friends for lunch…somewhere busy and social and with a beer garden so we can sit in the sun (Yes, I’m imagining Summer!) because I’m not longer sensitive to weather and I will tan and not burn!

I would then go to a travel agents and book a looooong, exciting holiday to places I can explore, meet new people and make memories. I won’t be worrying about money or being frivolous because I now cherish life, it’s not a rehearsal so work hard play hard has much more meaning. Following this I pop to the book shop to buy a real book because I can read again and I go home to sit in the sun, with a Kopperburg cider and read my book…it’s bliss.

As I sit in the garden, I don’t feel fatigued, I’m not worried about the brightness or the words blurring on the page. I don’t have to think about pacing or consider the guilt I feel for things I can’t do or contribute to because I am now able to contribute to society again. I can teach but also know that I don’t live to work. My health, family and friends are my priority and I will never again let work rule the roost. I reflect on how lucky I am to be surrounded by the people I have in my life, how they never gave up on me and how I know they never will.

I then go upstairs to have a bath because I recognise the importance of self care and quiet time. But also because I know that tonight I am hosting a party where everyone is coming round to eat, drink, play games and have a good time. Everything is organised and I’m not even thinking about the tidy up because I can manage it! I am grateful to be well, to be able to function as a normal human being and live a normal life doing all the things I love to do and after a brilliant music filled evening of taking silly photographs and laughing so hard your sides hurt, I climb into bed feeling exhausted. But good exhausted. Exhaustion that will be alleviated by the sleep I’m going to get.  It won’t take me hours to get to sleep and I won’t wake up a gazillion times because of pain, I will dream and wake up to another day.

One day….

#hairlesshannah

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Health Update Time

The time has come to publish a blog that I’ve been writing gradually over the last three or so weeks. If you’ve been with my blog since the beginning you will know that writing has been an outlet for my emotions and has proven to be very therapeutic. However, it also lays me bare and it can be quite daunting knowing that my life is out there for the world and his wife to access and judge. That’s why I haven’t pressed publish on this post until now because it’s been a tricky few weeks and my writing is quite raw, but, it is my way of communicating so it seemed silly to write it and not share. I have no idea why but I find opening up verbally to the people I love really difficult. Not because they won’t listen, support and comfort, simply because I find it hard to put into words sometimes – odd when I can write without difficulty right?!

I’ll start from the beginning. A couple of Fridays ago Dad and I went to London to see Lumiere London. It’s something I’ve always wanted to go and see and take photos of and this year I felt strong enough to go and see some parts of it.  I cannot explain how wonderful those few hours in London were. Although cold, London was still. No wind, rain, it was at night so no sun…I was able to walk outside without intense pain on my head and face for the first time in well over a year and it felt liberating. So much so that I ignored all the other symptoms as they began to creep up – knees piercing, muscles contracting, headache niggling and fatigue enveloping me with each step. But I didn’t want it to end, I wanted a normal night and to enjoy the moment, a day or two pay back would be worth it for this moment.

 

Nah. My body was not happy with me. Saturday lulled me into a false sense of security as I woke up feeling not too dissimilar to when I over do things but by Saturday night I was in a world of pain and this continued day after day for almost nine days. This is often the case with ME, post exertion malaise will often only properly kick in until 24 hours after the activity. With this pay back came a world of grey and I couldn’t shift it. I couldn’t really focus on anything other than the pins and needles, the joint and muscle pain, the fatigue on top of fatigue and simply how low I felt. I was well aware that I wasn’t really talking to anyone, friends or mum and dad and I know how frustrating, irritating and annoying that must have been to live with but I couldn’t face it any other way. By talking I would cry and crying is exhausting and I literally didn’t have the space to exacerbate the hell I was experiencing. I wanted to be alone, in silence and darkness and to hibernate until it passed.

But for me, the hardest thing was a new symptom. Rage. Anger. I am not an angry person but honestly, I wanted to smash things. Break, punch, scream…I was so angry. Angry at myself because I hadn’t paced myself: I’d ignored all my CBT “training” and my body turned round and basically punished me for being so stupid. Then came the anger because I am done with this life I’m living in. For others I guess it’s easy to think I am doing well – I still smile, I’ve had a book published and I make cards and pom poms which is an improvement. I agree with that. BUT, and it’s a big but…I live every day at a level people take sick days for and when I push myself, what I experience is something most can’t contemplate because it’s hidden and it’s misunderstood. That place that I live in day-to-day is lonely and frustrating. I am not better, I am not well.

I did have a CBT session thankfully in which I cried…a lot…she knew something was up. And as always, she was fantastic at convincing me that I need to focus on the positive that I had such a lovely time in London and not to allow it to put me off doing it again because I need to throw caution to the wind sometimes and live. She explained it that if she, as a runner, suddenly went from running a mile and thinking she was doing well so went and ran a marathon the next day, her body would make her pay and that’s the equivalent of what I had done. And I get that, but as I said to her, what I did in London that night was a fraction of what I’d have done in my previous life and it just seems so cruel and unfair that this far down the line I still can’t.

I’m angry that the life I lead now when I have a good day, is like the couple of days after you recover from flu and think – phew I feel a bit more human today. We did laugh though when at one point she said – just tell me all the things you’re angry about, which I did and then added, “I hate that I’m making f**cking pom poms and I am capable of so much more!” It just sounded so juvenile and ungrateful that it jolted me a little. I love making crafts but I can’t make it into something I’d love to because I don’t have the brain or body capacity to, so when you break it down, I make pom poms when I used to teach and make a difference and I just feel like my brain and body is rotting and isn’t good for much.

It’s so hard accepting that you are experiencing a hellish few weeks but that when you feel “better” you will simply be back at the level that most people couldn’t cope with. I have forgotten what it feels like to wake up and feel refreshed from sleep, to have a day without pain, to wear make up or have hair, just to feel nice. It’s not a pleasant place to be and it’s a daily battle to keep taking steps forward and bury the negatives and focus on the positives.

I mean – I did warn you that this post is a brain dump of everything I’ve been feeling, it does seem over the top and desperate but I guess that is the truth of it at the moment. ME isn’t a straight path. You take a few steps forward and then from nowhere you are flung ten steps backwards. Being in such a dark place is scary which is why I am grateful for the antidepressants at the moment because I know I need them. It’s children’s mental health week this week and now, having lived with an illness that’s so hidden and misunderstood makes it so much more important to spread awareness for these types of illnesses because they can so easily be missed, misunderstood and belittled.

Thankfully, with the help of some puppy love, brownies and time, I am just about out the other side of the pay back from that Friday three weeks ago and I will now continue with my targets and pacing and claw back some of the steps I’ve taken backwards.

puppy

Remember, be kind to everyone you see. You never know what they’re dealing with.

Happy Thursday.

#hairlesshannah

 

Lonely.

The definition of lonely in the dictionary is: ‘sad because one has no friends or company.’

I agree that this is one way of looking at the word however, it isn’t always as simple as that. I am sure the feeling of loneliness has affected most of us at one point or another in our lives but thankfully, I am also sure that the majority of people reading this are lucky enough to have a whole host of friends and family of whom they can call upon in times of need.

I started to really think about the state of being lonely a few weeks back because I did indeed feel very lonely and isolated. I count myself extremely lucky because I do have the most amazing group of friends and I live with my amazing family so the dictionary definition doesn’t fit in with my sense of loneliness. So how is it then that I go through extreme stages of feeling like I am totally alone?

I have always been very good in my own company. I can occupy myself and keep busy most of the time without giving it a second thought. I pop on some music or a film and can potter about quite happily without a second thought that I am ‘on my own.’  I lived on my own in the UK and in Dubai without giving it a second thought. Yet, I also absolutely adore human interaction and good company. I love a good catch up, bit of gossip, a debate, laugh or simply to sit in silence with someone close to enjoy TV or a film. I know some people aren’t like this, they can’t stand being in their own company or at least not for very long and I also know those who choose smaller amounts of time with people as they prefer the quiet life. There is no right or wrong, as individuals we all suit different lifestyles and ways of filling our time.

However, my circumstances have led to a real upheaval of my normal routine and therefore I have had much more time on my hands to be by myself and I can’t do many of the things I would usually do with this time because of my illness. Therefore, I spend many hours feeling isolated, frustrated and trapped. Although I have never had one day by myself since coming home two years ago, I have discovered that it is totally reasonable to feel lonely even though you’re surrounded by people – a crazy concept I know!

This isn’t a ‘woe is me’ post, more a mind dump of thoughts I’ve been having of late and a way of reasoning with my feelings. One is of course the circumstance I find myself in compared to that I wish I wish in. I don’t have a partner, I am a single pringle who is in no position to contemplate or entertain the idea of dating or finding someone. Therefore, that results in not having that one person to lean on, confide in, share with and look after. I love a cuddle but I can, at times, go days without any human contact physically. That is sometimes my own doing because I know if I am touched I will crumble and I don’t always want that!  Of course I have the emotional support from my family on a daily basis, but ultimately, when I go upstairs and close that door, I am alone. Just me. Just me and my thoughts. And although sometimes this is all I want, it’s where I can just focus on what I need, it can also be a danger zone because being alone can become quite a dark place at times.

During the last month I have made a choice of being alone most of the time. I haven’t been in a good head space and haven’t wanted interaction and when I have, I’ve found that the smallest of things will irritate or upset me. I’ve just wanted peace and quiet, low lighting and comfy surroundings to ease the symptoms that have become so acute. This is most definitely a double-edged sword because although it’s what I have wanted, it hasn’t necessarily helped. Being around people and socialising, although exhausting, lifts my mood and occupies me. I’ve noticeably not reached out to people for company like I normally would and I am now consciously making more of an effort because I know that friendships are two-way and I can’y always rely on others to organise, I need to meet them half way. That’s where CBT is helping because I can pace myself in terms of self-care and preservation alongside seeing people and doing nice things to keep me going.

Lonely is a tough place to be. You can’t always see a way out of it but there are always options – texts, phone calls, Skype, arranging catch ups or simply making links within communities on social media with people who understand what you’re experiencing. This is one that I find most helpful at times because one cause of my loneliness is the feeling that people don’t truly understand and ‘get’ what I’m going through on a daily basis. It’s through no fault of anyone, life has to go on, but at the moment I simply can’t shake this overwhelming sense of feeling trapped by my mind and body. For the first time in months I gave up the other day. I uttered the words, “I can’t.” I’d gone with mum and dad for a little walk at High Elms, it wasn’t sunny so my pins and needles shouldn’t have been too much of an issue – but storm Brian had other ideas and set about sending strong gusts of wind. The only way I can describe it was that the pins and needles were lodged in my face and head, and every time the wind blew against me, it pushed those bloody things in and out of face and head like they were drilling tiny holes. It was so painful and for once, I couldn’t ignore them, so I went back and took shelter in the car. I didn’t cry, I didn’t get upset, I just felt anger. Like so many times at the moment, I wanted to scream, to shout and to vent the frustration that courses through my body several times a day. I hate this life, I hate my body and I hate that at the moment, my mind won’t let me push these thoughts away.

ME is a lonely illness, it is isolating, it is frustrating and it is a place where you spend a lot of time alone. I’m okay with that most of the time, I’m becoming more accepting of it because really, there’s no other way I can be because there is no fix for it. I don’t always want to talk about how I feel or what I’m thinking, I don’t want to discuss the pain or frustration but that equals an even more lonely feeling because I can’t share it with anyone, I only burden myself and that is tough. I just have to remind myself that although I spend much of my time by myself or with the same four people I share a house with, I am not alone.  I will never be alone and I should be grateful for that. There is always someone who will listen, whether that be someone you know or a stranger you can connect with. We must take advantage of the positives that living in this social media driven world provides us with and I can’t recommend it enough.

So, please, if you’re feeling lonely today, reach out, talk, share and know, you are not alone in whatever you are going through so don’t be afraid to talk.

Be kind to yourself.

Happy Tuesday,

#hairlesshannah

 

 

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Me, ME & CBT

On September 21st, we were made aware that Radio 4 would be doing a phone in all about ME/CFS. So, mum, dad and I sat in the kitchen and listened in and I have to say, my reaction was not necessarily what I was expecting.

I assumed that the show was probably picking up on the fact that there has been quite a bit of press attention towards ME/CFS recently because NICE have ordered a review of the “treatments” available. Because of research I have done, I was aware that there are many people who suffer with ME, around 200,00 in the UK and there are only two therapies recommended by the NHS- GET (graded exercise therapy) and CBT (cognitive behaviour therapy.)

The phone in involved many people contacting Radio 4 and giving their experiences of ME and talking about the support and treatments they have tried or been recommended. And that’s where I was astounded, the sheer quantity of people they had contacted them was overwhelming and each person they spoke to or read out an e-mail from was so devastatingly sad, hopeless and in many ways negative. Yes, in some ways I found it encouraging that it’s not just me that has experienced the lack of knowledge around the illness from health professionals, that treatment options are sparse and that language used towards us is often belittling and derogatory. That I am not the only one suffering the way I do on a daily basis and feeling like they’re getting nowhere.

But what I found most frustrating was the views they put across about GET and CBT. Now, I am not a specialist on this and would never claim to be. Everyone’s experiences will differ and depending on the outcomes of said treatments, people will have different opinions on their worth. I am well aware there is no “cure,” and I know that there are many differing levels of suffering with ME and that I am by no means at the severe end of the scale. But that’s what’s tough, my level of suffering is bad enough so to imagine it being worse is unthinkable.

I won’t be commenting on GET as I haven’t any experience of it but as you may know if you have read my previous blogs, I have been given a course of CBT on the NHS. Even though I had heard some negative connotations around it, I really am a – ‘anything is worth a try’ kinda gal so purposefully didn’t do too much research as I wanted to go in with an open mind.  Therefore to listen to so many people’s stories of how it hasn’t worked for them, made them worse etc made me fearful for those who have been offered CBT and haven’t yet started.

I am ten sessions in and am still totally undecided on how I feel about it. It’s hard. It’s emotional and in some ways I have had to take steps backwards BUT I can see the reason why it is suggested as something to support ME sufferers. It has not made me better but it has helped me to “cope” a little more and supported me in terms of learning how to pace myself properly – before was all guess-work and I didn’t know what was best. I am lucky that I immediately hit it off with my therapist. I like her but more importantly, I trust her. She hasn’t once fed me the optimistic bs that so many doctors and specialists have over the past two years, she hasn’t guestimated how long it may take to make improvements and she hasn’t once made me feel stupid or that it’s all in my head.

My mind is still divided and in some ways uncertain as to some of the things we do – sometimes I think if I have to fill in one more bloody diary sheet I might scream!! I am not for one minute saying no one should be negative about CBT because believe me, I’ve had my moments. It isn’t a cure but you know what, if it’s the only thing that can be offered to me then I’d be silly to not give it my all and put my trust in her.

I spent the entirety of my last session talking to her about the Radio 4 programme. She hadn’t heard it but was interested in my thoughts and feelings. I admitted it had made me doubt the CBT process and feel terribly upset and worried that if it doesn’t help me, there aren’t any other options and it had made me feel hopeless. I also expressed my deep sadness for those about to start CBT or those who are only a few sessions in who may have tuned into the programme. At that stage you are so vulnerable and it could totally tip you over into the frame of mind to approach CBT negatively from the start and that surely leaves you in a worse off position than going in open-minded?

I explained how I worried that our sessions were very much based around unhelpful thinking patterns and that although I understood that helps my mental state, ME isn’t a psychological illness, it isn’t in my mind and that made me sad to think that is how I was potentially being viewed – as nuts. Or as it was expressed on the show, an over emotional female who can’t cope!

My therapist then took time to explain how she 100% knew that ME was not a psychological illness. How she’d worked with people who were bed bound, had seen the pain and other obstacles that her patients have to deal with first hand and that she would never want me to think that she thought of me as mad!  Once again she reiterated that she could make no promises with my recovery but that everything we do is with the aim to improve upon the way I live my life day-to-day right now. And that may be simply by increasing my daily activity by five minutes and she would be excited by that. Then we discusses my brain – a scary thing I can tell you! There is so much in the press about mental health which is so brilliant and she explained that although ME most certainly is a physical illness, the psychological fall out is just as real. The impact that ME has on your life is beyond explaining, I still struggle to fully explain the pain and frustration that lies behind my smile and the tears that are always ready to pour – to most it either looks like I’m fine or on the flip side that I’m in a mood (sometimes that’s true but mostly I cope by either smiling or being quiet because words just aren’t enough.)

I am slowly learning that my brain is just as in need of treatment as any other part of my body. If my arm broke, I’d get a cast, if my eye sight starts to go, I’d get glasses, if I hurt my back, I’d get physio. So when my mind is put under stress and strain, why shouldn’t I seek help through therapy? And there in lies the beauty of CBT. I can talk to someone who knows ME like the back of her hand, I’m not saying they all do, but luckily, my therapist is first class. She understands my symptoms and she helps me, asks me what I want to talk about, what I want to aim for, what my ultimate hope is for my illness and the treatment and slowly, gradually we work together to try to aim for that.

We make and monitor targets. I needed to know if and when I should push myself. I have totally reverted to being a teenager again and feel terrible guilt if I don’t achieve my targets or have to turn up saying, “Sorry, I didn’t do my diaries this week because, well, I wasn’t in the right frame of mind.” It’s awful, I feel like I’m going to get detention! But that’s something to work on because as you may have guessed, she doesn’t get mad, she doesn’t berate me. She tells me I know my body and mind the best. I know when I can push myself to achieve those targets we set, there is no point adjusting them or pushing for them if they will make it harder than it already is on a daily basis. Now that doesn’t mean she doesn’t push me to some extent but she pushes me within or jsut slightly beyond my limits and always does so with care and consideration. She is always at the end of an e-mail and replies quick as a flash and has supported me in so many other ways outside of the therapy room, in ways no one else has done before. I tell you, this woman really is top class.

It’s hard to see any progress, it’s like looking for a needle in a haystack sometimes and I know I get blindsided by time and milestones i.e. it’s nearly two years since I’ve been home and I feel just as stuck and possibly even sadder than I did back then. But at the end of the last session, she sensed that the Radio 4 programme had popped a seed of doubt into my mind so we got out my targets and charts from when I first met with her.

Over ten sessions (24 weeks) I have upped my daily activity by 20 minutes, this doesn’t seem by much but when most of the activities I do link to crafts – using scissors and using my hands, well, that hurts quite considerably so, yeah – 20 minutes is a lot!  I have reduced my daily sleep allowance to 2 hours (not achieved on many days, but on more than not) and when I achieve my ‘get out of the house daily’ (not met on 6/7 days this week, hangs head in shame) I can walk for 15 minutes without needing to stop or get home. I have also started to drive once a week, 5 minutes down the road to get to my reflexology sessions which is the biggest thing for me because I feel like that gives me some independence. I find it daunting and scary because I haven’t driven for so long and I am very aware of my capabilities or lack of them!

So, in actual fact, I have made progress. Yes, I may have achieved these without CBT but I reckon, for me, it would have taken a lot longer because I wouldn’t have known the best way, the safest way, the way which would help me most.

As I said at the beginning, this is my own personal experience and I know not everyone will be as lucky as me to have a therapist so experienced and so wonderful. But I guess what I’m trying to say is, if you haven’t started CBT yet or are nervous to, try not to be. Everyone’s experiences are different. It’s important to be honest, yes, and it’s brilliant to take advantage of that online community because you get so much support through it and learn a lot, however, as we know all too well, online communities can also have a flip side. It’s a safe place to moan and vent, I’ve done it! But that doesn’t mean it should cloud your experience. In the week between listening to the show and seeing my therapist I spent a lot of time online looking into others experiences with CBT and honestly, I only found one or two positive ones. I then felt bad, guilty almost that in some ways I am finding comfort from it. I’m not stupid, I know it won’t cure me, but I am realistic in that it helps me and I’m okay with that, it’s the closest I’ve got so far with any kind of proper help.

So accept those NHS sessions if you’re lucky enough, like me, to be offered them. And if like me, you weren’t aware that you could get access to sessions on the NHS, ask about them, request them, because who knows, you might actually find some benefit from it like I have. I certainly hope so anyway. This blog all began because I wanted share my experiences with alopeica but I think it is so important to share the good alongside the bad. Sharing positive experiences is so important, so please, if you’ve had a positive experience of CBT, let me know, comment below or send me a message, I’d love to hear about it.

Have a good Friday and a lovely weekend,

#hairlesshannah

My spoonie survival kit!

One of the questions I am often asked is what things help me on a day-to-day basis, things that ease the symptoms of ME. Obviously this will differ from person to person but I thought some might find it interesting or helpful to see what helps me, so here is my ultimate list for my spoonie survival kit!

What I always carry in my bag

I have never been one to pack light, even in my days pre ME! In the sixth form I was awarded the medal for being ‘mummy’ as I could pretty much always provide what anyone needed, from a tissue to a paracetamol, polo to a nail file! You will very rarely see me with a small bag as it just simply wouldn’t cut the mustard (where does that saying come from?!) in order to accommodate my needs!

  1. My polarised sunglasses. These were an expensive purchase when I lived in Dubai but my goodness have they been a life saver since being diagnosed. My light sensitivity is really bad and the difference between wearing normal sunglasses and my polarised ones has been incredible.
  2. Ear plugs. As I’ve mentioned before, noise sensitivity has also remained a real issue for me. As soon as I go somewhere that is more crowded I need these bad boys to keep my head from exploding. At home we can monitor and adjust the noise level but that’s not so easy if I venture out for a meal or to walk around a shop!
  3. Polos and rescue remedy. These two have featured in my bag essentials for a while now. Since suffering with panic attacks, these two things are my go to life lines. Bach’s rescue remedy I find really calming and helpful and as for polos, I’m not overly sure apart from a previous CBT therapist explained it may be because I can focus on a different sense which distracts me from my anxiety – who knows, all I’m bothered about is that they help when my anxiety rises!
  4. My little medication purse. One of my anxieties is that I could be somewhere and not have the thing I need to make me feel better so I have a medication bag! The essentials are: travel sickness pills, Imodium, paracetamol, Paramol, anti-histamine, inhaler, antiseptic hand gel, hand cream and throat sweets.
  5. Bottle of water. One of the side effects of some of the drugs I’m on is a very dry mouth but also, water is always good incase I need to take tablets or have a hot flush!
  6. Eye drops. Since losing my eyelashes I’ve noticed that my eyes are more susceptible to getting dry, itchy and getting dust etc in them. Eye drops are just a useful things to have at hand for those irritating moments.

 

At home survival essentials

  1. Electric blanket. Honestly, this bad boy is slowly becoming my new best friend! I haven’t had it on during the Summer but popped it back on my bed about three weeks ago and oh my, I had forgotten the benefits it provides. The difference in my restless and painful legs is definitely aided by this hot piece of material and I have found that the sleep I do manage to get seems to be of a better quality.
  2. My pregnancy pillow! Again, it provides me and my painful limbs with the much-needed support they crave. I am so much more comfortable lying down with this wrapped around me – who needs a man eh?!
  3. My diary. I’ve kept a diary every day since I was 11 but it really has been an essential for me as it’s a way of venting every day and getting my emotions out. I still find talking tough so this is my way of getting my thoughts and feelings out of my system before I go to sleep. Again, this helps me to go to bed with all those heavy thoughts weighing me down.
  4. Bath range! I love me a bath! Any Lush bath bomb will suffice but I absolutely adore the Marks and Spencers Sleep range. A friend got me them for my birthday – all lavender based, not overpowering, just right. A shower gel, foot cream, hand cream, body lotion and pillow spray, all amazing products although I am also partial to the Lush cream called Sleepy. There’s been a lot of press around lately about how it’s a miracle cure for insomnia…it hasn’t done that for me at all but I do love the smell and it definitely is a calming scent.
  5. Dimmer lights and subtitles! Yep, I am a granny…these link to light and noise sensitivity but there are always options to make life bearable.

 

So there you have it, my list of goodies that I use everyday to help me – if you have any to add to it, please comment and let me know.

Hope you’re having a lovely week,

#hairlesshannah

Introducing Sunshine Makes & Bakes

I am very excited to finally be able to let you in on something I’ve been working on! If this is your first time reading my blog, let me fill you in on my story so far.

My name is Hannah, 31 years old and I have both ME/CFS and alopecia. I was living and working in Dubai as a primary teacher when I became ill and had to fly home. I have moved back in with my parents and for two years have been totally dependant on them financially, emotionally and physically. Alopecia has robbed me of my hair, eyebrows and eyelashes and ME has robbed me of my independence, confidence as well as many other aspects of my life.

Before becoming ill I had no idea about the ‘spoonie’ community however, now I would class myself as a fully fledged spoonie. So let me explain; a spoonie is someone with a chronic illness. You start the day with a certain amount of spoons and as your day progresses and you do activities, you use up your spoons until you have none left or are in negative numbers! Spoons are often not refundable by sleep, sleep is often unrefreshing so pacing becomes the best option which is a hard lesson to learn.

spoon-theory

One of the things I have found the toughest is my lack of independence and relying on my parents to support me financially. So, a few months ago a little idea came to mind – maybe I could use my spoons to my advantage and set up a little business that I could control. I love to bake and I love to be creative and one of my sayings since getting ill has been, make your own sunshine. And so that is when Sunshine Makes and Bakes was born.

sunshine m and bs

Behind the scenes I have slowly, at my own pace, set up a little studio at home and begun to make crafts and bake cakes to sell and so far it’s been a revelation. It’s given me back some independence and given me a purpose again. I am in control so if I don’t have enough spoons, I don’t have to make or bake that day and if I am having an okay day, I can spend fifteen minutes, half an hour or even an hour working on my products. There’s no pressure of letting people down, it’s like a hobby that I control.

A website has now been created and I am ready to go live! I will be posting UK wide but if you’d rather collect and avoid postage fees that fine too. Obviously for cake orders it will be collection only. To ensure I am pacing myself I ask for 10 days notice on orders so I can ensure my health remains the priority. I am SO excited to share my wares with you and hope you might like what you see enough to make a little order!

There are many different items available – greetings cards, photographic cards using my own photos, framed and unframed button and scrabble art, magnets, magnetic pegs, Christmas card sets and gift tags and a wide range of baked, scrummy goods! I am happy to personalise orders – crafts and bakes –  and to talk through ideas you may have about products to ensure you get the most sunshine from every order you place. As they say – if you don’t ask you will never know!

You will notice that there isn’t a shopping cart on the website, all orders need to be placed via the contact page. Just let me know what it is you’ve seen that you’d like or something you like that you’d like to personalise and I will then send you an invoice before getting to work on your purchase. The website is best viewed on an iPhone or from your computer, it isn’t fully compatible with iPads yet.

 

So, here’s the link, go get some sunshine in your life!

http://www.sunshinemakesandbakes.co.uk

I am also on social media:

Twitter: @sunshinemandbs

Instagram: @sunshinemakesandbakes

Facebook: @sunshinemakesandbakes

So get following, get liking, get sharing and possibly even get ordering!  Spreading awareness about chronic illness is so important for me and anything you can do to help with this is always much appreciated.

But finally and most importantly, thank you so much for your continued support and well wishes, it keeps me going from day-to-day.

#hairlesshannah