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

Dream a little dream

If you take time to stop and think about how your brain controls everything you do, how it generates your thoughts and how it governs our emotions, thoughts, actions…basically everything we do, it can become quite overwhelming.

I am learning that my brain is quite an interesting little fella! It generates thoughts and worries that I can’t control – it’s like a beast that is refusing to be tamed! However, I am trying and through the help of CBT, I’m sure I will whip it into shape. I have found it so interesting dissecting my thoughts and learning about the influences that impact me and therefore enable my unhelpful thinking patterns. We/I often react to a situation by responding to how it makes me/us feel and that then leads to me/us behaving in certain ways and reacting to it on a physical level i.e. something has made me/us feel stressed so in my case, I can’t sleep and this leads to me feeling fatigued.

So if I try to consciously think about something it might start to change my behaviour, emotions and reactions which will mean that my physical and emotional responses will also change. The way it is described in the book I am reading sums it all up perfectly; The way we think about something will determine how we feel, and the way we feel will often determine what we do.  (‘Overcoming chronic fatigue’ by Mary Burgess.)

It is a really tough thing to unpick. I am keeping an unhelpful though pattern log at the moment where I have to dissect my thoughts. Thinking about the various aspects of that single thought is hard. Seeing things broken down and written in black and white really brings home the truth behind how I’m feeling and how it is impacting me on a daily basis. However, even though it’s a hard process, it is helping me to challenge the way I react and respond to my thoughts/worries. Don’t get me wrong, at the moment it really isn’t changing the way I respond to certain things but it is in the front of my mind and I am noticing how after I have these thoughts, I dissect them a little and challenge them and it helps me to box them up and shelve them rather than dwell as much as I have been.

Our brains are such intricate organs and one that I will never fully understand! Sleep is still a bloody nightmare for me at the moment. I simply cannot fathom how someone who is SO fatigued just can’t sleep. Over the last three weeks the most sleep I’ve had in a 24 hour period of 5.5 hours. I am sticking to my CBT targets and setting an alarm in the day for a maximum 2 hour nap although I could sleep longer – why is that?! Why could I sleep in the day with no issue yet when it comes to night-time, I just can’t get to sleep? And when I do, I will wake up every 30 minutes to an hour and then remain awake for anything up to two hours?! I just don’t understand and although I know so many ME sufferers have this problem – insomnia and painsomnia – I can’t find any research or explanation for it?

I have always been a vivid dreamer – always in colour and I can often wake up remembering them. But over the last few months – really starting when I was taking melatonin – my dreams have become stunningly vivid. I have a least one dream that I wake up from a night that feels like real life and affects me on an emotional and physical level. Some are totally bizarre although I can relate them to something I may have watched on TV or read about but some are quite clearly linked to my subconscious and they are the ones that are having the biggest impact on me. They are so cruel, it’s like my brain is torturing me on yet another level and although the dreams are wonderful to “live” through at the time, they are a flippin’ hateful things to wake up from because I come back down to Earth with an almighty thwack!

I’ll give you some examples! Here are two of my more bizarre dreams of late!

  1. I was the right hand lady to the President of the United States who just happened to be Denzel Washington – I do love that man! He was in terrible danger and I had to defend him Jack Bauer style and I have to say, I was kick ass! The dream ended with him shaking my hand and thanking me and I replied, “It has been an honour Sir.” Ha ha ha I mean, this is obviously a dream concocted by someone who loves ’24’ and would love to be a real life super hero!
  2.  Tom Jones was my friend and he was about to do a concert but had very swiftly been struck with dementia so couldn’t remember any of his song lyrics! Mum was hysterically upset because no-one would ever get to watch the genius of Tom in concert again and the dream ended with me trying to find a cure for dementia.

And then we come onto my more upsetting dreams to wake from!

  1. The marriage dream. I’ve had several dreams where I am either getting ready for my wedding day or living my wedding day. I can never see the face of the man but I just know I can feel how happy I am. The dress, flowers, party – everything – is always beautiful and the happiness overwhelming.
  2. The engagement dream. Again, where I can literally feel how happy I am and how in love and the dream is based around telling people we are engaged and it’s all jolly and wonderful!
  3. The baby dream. I am either pregnant or have a little baby and again, totally in love and totally happy. The most recent and interesting dream linked to this is one I had last week; I was a single mum, pregnant and had consciously decided to use a sperm donor because I hadn’t found the right man but knew I wanted to be a mum! I had a C-Section and had a little girl!

These dreams are tough ones because they are all linked to my real life dreams – I would love to be in a happy relationship and have my own family unit and if any of you know me, I have always wanted to be a mum. These are all things that for now, are way out of my reach and are pipe dreams quite literally. So to wake up feeling so deeply the happiness and love and then realise it isn’t true is hard and it takes me a while to shake it and separate it from my actual reality.

I love a good dream and what I am trying to say here is how powerful our brains are. Even in our sleep they manage to formulate our conscious and sub-conscious thoughts, hopes and wishes and bring them to life. It brings me back to the fact that our brains are equally a part of our body as a leg or arm and need to be cared for in the same way. We may not be able to see the hurt and damage that our brains are dealing with but that doesn’t mean that it’s any lesser than anything else that needs care and attention.

So, as always, remember that not everyone’s demons are visible, they can’t be fixed quickly, people can’t just snap out of it and all they need is a shoulder to cry on, a listening ear and a good old laugh.

Happy Friday everyone.

#hairlesshannah

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The reality behind the photo

It’s been a while since I wrote about how I’m coping with having an invisible illness. I’ve now been formally diagnosed with ME/CFS which was both a relief and a worry. A relief because I can now answer questions definitively about what is “wrong” but also a fear because part of me really didn’t want it to be ME. I wanted it to be something curable, treatable…for someone to be able to ‘fix’ me.

I’ve been using social media much more to promote my blog lately and as we all know, social media portrays an image of people that doesn’t always reflect the honesty of your reality. Some people that I follow who have ME are truly brave and use their accounts to show the reality of daily life living with ME, but I don’t. I guess I don’t because I try to keep as many aspects of my life positive and happy in order to keep myself as pepped up as possible. There is nothing wrong with either but my option does then cause problems. By posting a photo that shows me out, smiling, laughing, with people, posting positive etc etc it would appear there’s nothing wrong with me. I’m not opposed to the odd selfie but I also don’t always feel comfortable to show reality through them, my space for being honest is here in my writing.

But what I want to write about in this post is the story behind the social media photos. Photos give you a snap shot. Take for example the photo below.

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This was taken on Friday evening at a surprise party for my ex head teacher and friend. I was picked up at 7pm…well 6.45 as Olivia was EARLY!…the party started at 8pm and my Dad picked me up at 9.30. In the photo I am laughing, surrounded by some of my loveliest friends, drink in hand, having a ball. And I was. In that moment I was happy, I was with people who accept me for who I am, support me through what I’m going through and understand my limitations. To many people though they will see this photo and possibly think the following:

  • Hannah is out, she tells us she’s in bed by 9pm
  • Hannah is dressed up and out at night when she tells us she struggles with noise and busy places
  • Hannah tells us she is in constant pain and can’t do very much let alone go out with friends

Now, I will tell you the reality behind that photo. I haven’t been out in the evening in a party situation since July last year and on very few occasions have been out for a meal in the evenings, so Friday was a big deal. I was anxious about going and I spent most of the afternoon trying to nap to have enough spoons to cope and calming myself down in anticipation. When we arrived it was much louder than I’d imagined it would be. I put my ear plugs in straight away but soon realised that because it was so loud, music plus ear plugs meant I couldn’t hear a word anyone was saying! So I spent the entirety of the few hours I was there with an increasingly banging headache and fuzzy head. I loved those few hours, but I also felt so self-conscious. I was literally the only bald person in the room, I felt like the light was catching my head or that people were staring at me and I certainly didn’t want to be in any photos. I felt hideous, I didn’t feel feminine, I felt ugly and awful and the worst I’ve ever felt about myself. So that photo was me putting on the biggest show of my life in a way – I was happy but would have been happier to not have been captured in that moment. By the time Dad collected me I was done. My legs, knees and back were throbbing, my ears were ringing to the extent I felt like I was shouting when talking to him in the car on the way home and my head was pounding. As I lay in bed that night it was like I was drunk (I only had diet coke!) my head was whirring, my legs cramping and having spasms, my knees seizing. I finally fell asleep at around 8am. That is the reality behind what it took for me to be at that party for two and a half hours.

I’m 31 in a few weeks. I should have been there with my friends on Friday until 1am dancing, drinking a Malibu and coke and being the one snapping the photos like I have always been known to do. I should be looking back on my 30th year and have it littered with good memories of adventures, holidays, milestones and happy times. Instead, it’s a year of appointments, medications, blood tests and sleep. Of course I have had happy times in the year but I think you know what I mean. I feel like a shadow of my former self and I find myself needing to defend how I feel because of photos like the one I’ve talked about. I refuse to not post those photos because otherwise I will not have any memory of these years, in effect I will be missing from these years of my life. There’s a campaign called ‘Millions Missing’ that promotes ME. It talks about how people who have ME are missing from their jobs, social lives, holidays, families..we can’t participate in life in the way we used to but we are still here, we still make the most of what we can when we can. Last year they organised a protest in Whitehall and various other places across the world where people left pairs of shoes to demonstrate how they were missing from their lives because of ME and protesting for the fact that more needs to be done in terms of research and greater funding needed from the government to help people understand the illness more and treat it and it’s sufferers better and with more care and consideration.

millions missing.jpg

I have been talking to a dear friend this afternoon about this but also about mental health and the similarities that we share. Mental health is also an invisible illness. Just because we had a good day or hour or five minutes yesterday, doesn’t mean we will today or tomorrow or next week. Mental health and ME are fluctuating conditions with no rhyme or reason, no straight path or definitive ending. They are illnesses that need understanding and for people to simply say, “I believe you.”

I find it hard when I see people who say, “You’re looking so well,” or “You’re looking so much better than when I saw you last,” because it makes me feel like a fraud. I feel like I need to defend myself and explain that it’s a hidden illness and looks can be deceiving. If I could wear a wig and pop on some make up I would look totally and utterly fine but I’m not. I feel embarrassed to have to then explain that I’m not actually feeling great but, “thank you for saying I’m looking good.” I know whole heartily that these people are probably being really genuine and kind –  it’s my issue not there’s, I should be thrilled to be told I’m looking well. But because of my personality, I worry that they think I’ve been having them on. My positive attitude and positive mask can work against me in that way because people come to believe it and don’t question it. I saw a friend the other day and we talked about how I am, the loss of my nose hair (!) and everything else in-between but when I saw her again on Friday night she said something that made me smile from inside out. She said that when she got in the car to drive away the other day, she thought about me and what we’d talked about but then she wanted me to know she thought, Hannah is still the same as she’s always been to me. Wicked sense of humour, same old laugh and smile and sense of caring for everyone. To hear that being said so genuinely meant so much, it wasn’t focused on how I looked, or all the changes in me that have occurred, it was a comment about me as Hannah.

Living with an invisible illness is teaching me so much and I’m sure there’s more to come. It’s such a debilitating condition that is stripping me of so much of what I consider my identity. And there’s no end in sight especially when the only recommended “treatment” of a course of CBT is a waiting period of 4-6 months! So, I will continue to try to test different ways to cope and pace myself, I will deal with the ups and downs, I will continue to try and like myself and my appearance, I will try and start to accept that I can’t drive or have much independence and I will continue to strive to stay positive.

It’s a lonely place in this little arena, my bedroom and little writing area are my safe place but they are also lonely. It accentuates the fact that I’m not in a busy classroom or planning for nights and days or even weekends out. But it means that when I do see my friends or I do go out with my family that I don’t take it for granted. I savour every moment even though it may hurt and will inevitably wipe me out for hours, days or nights after. Because at the end of the day, whether I like it or not, this is my life and I will still only get one shot at it. If and when I get better there won’t be a rewind button.

So as with so many of these blog posts, I leave you with this thought: many people you know or will meet may have so much going on in their lives that isn’t visible to you. So be kind and patient and understanding. Give them time, give them a smile and possibly some chocolate…every little helps!!

See you Friday.

#hairlesshannah

 

Catching some zzzzz’s

Sleep.

When you think about that word, what does it mean to you? Is it a thing of beauty, does it conjure up images of an inviting bed made up with the softest, fluffiest pillows and prettiest of covers beckoning you to snuggle down and rest and recuperate? Or does it simply mean a thing that you need and have to do in order to function for the next day?

Do you need a certain amount of it in order to feel human and happy?  What is your minimum amount that will allow you to be human and not become a monster when anyone dares to talk to you?! Are you a late nighter or a 10pm-er? Do you enjoy a lazy lay in or are you an early riser? Is sleep a thing just for nights, do you revel in a cheeky little nap or have you trained yourself in the art of power naps? Do you need to set an alarm or is your body conditioned to your work schedule?

Does sleep bring you a release? A place to be you, to be quiet and thoughtful, to dream and escape? Is sleep and your bed a place you welcome when you return from a holiday or can you sleep anywhere?

sleep 1

Sleep, for most, comes naturally. Our body clocks know when we need it and how long for. Our bodies are very clever like that, it knows when we need more or when we can possibly cope with less. That is, until our bodies’ works against us and that leads to some very tricky situations as I have been learning. Sleep has become much more of a nightmare for me since becoming ill. Having researched more it is very clear that many ME CFS sufferers have this same problem; the feeling of overwhelming fatigue is there all the time, the ease to nap during the day out of necessity unlike in the university days when a nap just helped you for the upcoming night. Yet when it comes to the evening and the night-time, sleep seems to evaporate. Our bodies pain sensors kick into overdrive and sleep gets further and further from our reach.

I have never had issues with sleep before, I’ve always needed between 7-8 hours and that has always suited me well. But now, insomnia/painsomnia is in my vocabulary and it sucks. No one can really explain why this happens but it clearly does. As with the rest of the research with ME CFS, there isn’t enough of it to explain all of the side effects and symptoms. I guess it’s almost like when people say you’re overtired or you’ve had too much sleep and your body gets confused. But with my body, I can’t sleep because the pain intensifies and I simply can’t get comfy…even with my pregnancy pillow! I have tried sleeping tablets which to be honest worked a little but not enough and in any case, I can’t stay on them as they are addictive. I have started using herbal remedies but they just don’t seem to match up to the discomfort and insomnia.  I do manage to get some sleep when my body literally crashes but it is always broken and it is never deep, restful or refreshing.

I’ve tried everything in the depths of the night to distract myself from the pain and discomfort.  I’ve tried laying there and persuading my body to rest and sleep. I’ve tried watching box sets and TV programmes, listening to music and audio books, colouring, blog writing, pacing around my room every half an hour to move my stupid aching limbs. Nothing works and that’s when the frustration kicks in, that’s when the mind starts to act against you too and the endless thoughts go round and round your brain tormenting you. It’s such a lonely, scary place to be. It’s a feeling of being trapped and not being able to escape, a feeling of the unknown. And this goes round on repeat until eventually the body can’t take it anymore and shuts down and sleep occurs. Then I’ll wake every hour or so until I make myself get up ready for another glorious day!! Our bodies and minds really are a marvellous thing but sometimes I just don’t understand them. They are meant to be wired up to help and protect us so why do they work against us at times?

Sleep is just another thing I’m having to approach differently these days and that is just how it is. It’s not nice but it’s not the end of the world –  it’s just another thing I just never appreciated enough at the time..but then who does?

Hope you all sleep well tonight, sweet dreams.

#hairlesshannah

Unwanted visitors

So many people I know have had some, metaphorically speaking, unwanted visitors knock on their doors lately that you can’t turn away or shout at or send an e-mail to because they are part of you. Illnesses, diseases, things that you can’t slam the door on.

I am obviously purely speaking about my situation and therefore my experiences, feelings and emotions so they may not correlate with anyone else so don’t get cross if you don’t agree!

My illness is hidden so I find myself in a situation where I have days when I look better than others which seems to indicate to people that I’m getting better. I’m not. That is why it is called a hidden/invisible illness and that is why it is so frustrating. I think I become even more prone to this kind of comment because I don’t show my true feelings and emotions so therefore it is even easier for people to assume I am getting better and feeling great. I’m not.

Because my ‘complex’ case is STILL under review by many doctors and specialists, it seems like I am forever waiting for answers, fighting tirelessly to get people to fight for me! I’m 16 months into this now which I know is a long time. So much can happen in 16 months and has done to most of the people in my life – good, great, bad and bloody awful. But it also means that due to no fault of anyone, and I mean that wholeheartedly, life goes on. My life is stuck but other people’s aren’t. So therefore I have become lonelier, felt more isolated and even more desperate for healthcare professionals to take me and my life seriously and help me.

But it seems that healthcare professionals, even those at supposedly the best hospitals in the country, don’t feel or see the urgency in my eyes. I am acutely aware that what I have is not life threatening and don’t ever want to compare it to those who are living with those illnesses or are no longer with us because of them, but what I am living with is totally life changing for me. Last week I met with the first doctor in months that actually listened, took time and an interest in me and gave me hope. Only for that to be totally shattered when he phoned me Friday to tell me most of what he’d said was incorrect. The referral will take months and even then may not be accepted as it has to go through funding applications and that the help he’d promised in the interim was for those who live in Southwark only – when did I ever tell him I lived there?! So here I sit once again, being totally let down by the only people who have the power to help me.

I don’t recognise my life anymore. I described it this week by saying I feel like I have an existence, not a life. Most of the doctors and specialists fail to see me as a human. As a 30-year-old woman who has so many hopes, dreams and aspirations,  who’s existence is mainly lived out within the four walls of her bedroom. The pain I have is constant and worsening, I’m experiencing pain insomnia on levels I never knew existed. It takes an age to get up and get ready and in all honesty it’s taking all I have at the moment to even do this because really, bed is the place that comforts me most regardless of the pain.

In bed, I only have to move to change position and shift the pain locality. In bed it’s quiet, the curtains are shut and it’s dark. I can drift in and out of consciousness, cry or just contemplate and dream. If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth. If I’m up I can’t manage to do much which frustrates me. My hands are becoming even more painful so even typing for long periods hurts. All I really have is my blog to make me feel purposeful but creating the content for it often causes more pain than I feel the blog is worth. But then through the blog comes the communities I’ve become part of – the spoonie and chronic illness heroes and heroines that give me hope and strength are incredible.

The doctors don’t see the life that I seem to have left behind. I can’t drive, I can’t socialise, I can’t stay up late, I can’t shop or treat myself, I can’t save for holidays or beautiful bags and shoes, I can’t treat my friends and family, I can’t blare my music out and dance around my bedroom whilst getting ready for a girls night out. I can’t even drink a cider because of the tablet concoctions I take daily – it comes to something when a practically teetotaler is craving a cider! Lately, I’ve even come to wish I hadn’t experienced the life I had in Dubai because life was so good. Even though work is more than likely the trigger for this situation, socially life was amazing and the opportunities that fell into my path enriched me more as a person than I ever dreamed of, I had plans that were unfinished and unaccomplished which means I know what I’m missing and then I start to resent that.

I know there is no easy fix to this. I know there is a long road ahead and so much more uncertainty but all I can tell you is that I wish this bloody unwanted visitor would f**k off out of my circle as quickly as it arrived.

I read a quote another spoonie posted the other day and I loved it – it’s not me that’s unreliable, it’s my health.

Rant over! Be nice to people today and remember, they may be going through something that you just might not be able to see. So be kind.

Happy Saturday.

#hairlesshannah