Image

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

Advertisements

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

A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#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

Image

Out with the old, in with the new.

2017 is almost upon us – I find it so difficult to comprehend that this year is almost done. The other day we sat around the table and did our annual, “what have your highlights been this year?” game. To be blunt, I couldn’t think of many. There have been many headlines about how 2016 has been the pits in terms of celebrity deaths, Brexit and Trump and my year fits quite neatly into that box of crap.

2016-deaths

Obviously I enjoyed our joint birthday bash and there have been the other days out that have lifted my spirits but all in all the year has been littered with appointments, frustrations, tears and sadness….oh and lots of sleep!

I do understand the whole ‘new year new start’ business yet when the clock strikes midnight on Saturday, things won’t magically change. As I did last year, I still have hope that in another year’s time things will be ever so much brighter but I now also have an inkling of fear that that won’t be the case. I’m still no closer really to a diagnosis, medication is still being figured out and if anything, I am in a worse state than I was a year ago. Therefore I approach New Year’s Eve with trepidation. Whereas last year I found Christmas much harder, this year I find myself getting emotional even thinking about the countdown to 2017. I don’t have any plans and 2016 feels like a total waste of my life. I know people will say, it’s not, you’ve done so much in other ways, but to me, this year has been rubbish.

I usually make resolutions like most people do…give up certain things, lose weight, take up a new hobby etc but this year I’m not making them. I’m just going to see what comes along and embrace moments with the aim of getting and feeling better about my life and myself. I guess this is because I fear that making any resolutions about my true hopes could end in more disappointment and to be honest, I couldn’t really deal with that. I think I’ve reached a level of stale mate. I’m now an accomplished actress of disguise but I’m finding it harder and harder to “be strong” “be positive” “have hope.” Living through 16 months of this has, in all honesty, been a living hell and because most of what I’m experiencing is invisible, it makes it even harder to explain and cope with.

Watching my friends and family go through their own hardships this year and not being able to help in the way healthy Hannah would have, has been hard to deal with. It’s been a learning curve to think up new ways of helping. I think this year has seen a lot of us having to really grow up and face grown up issues but thankfully we have grown together and it’s made us stronger. Life can be so cruel and unfair but unfortunately that is life and we have to keep going because what’s the other option? It’s the relationships we make along the way that help us put one foot in front of the other and that should never be taken for granted. Any type of relationship needs to be worked at, they are two-way interactions and sometimes cracks turn into great big crevasses that can’t be repaired but that is also a lesson worth learning.

relationship

I’m aware that this post seems very doom and gloom and don’t get me wrong, I will be thrilled to see the back of 2016 and start a fresh. Maybe a new year will make me feel stronger again and I do hope that’s the case. I have lots of things to look forward to; watching my friends move into new homes, watching their children grow up, seeing my little brother move out and start making his own home with Yaz and seeing what my parents will get up to now they’re both retired! I live vicariously through all of these things. I don’t want to be tip toed around incase I get hurt or jealous. I want to hear what everyone else is doing, in the same way that I want to hear if they aren’t having a great time of things. Just because I have a long-term illness doesn’t mean that what anyone else is going through is any less important. I can still listen, give cuddles and be a shoulder. Like I said – relationships are a two-way thing.

 

I truly hope that 2017 is much perkier for all of us and that there are more moments of sunshine that we don’t have to make for ourselves. Here’s to light at the end of tunnels, to giving each other strength when we can’t muster our own, to bringing smiles to each others faces and to providing love, kindness and compassion as and when it’s needed.

Happy New Year everyone…see you on the flip side!

#hairlesshannah

 

<a href=”https://www.bloglovin.com/blog/14626483/?claim=udwfj58w5bf”>Follow my blog with Bloglovin</a>