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Afflicted

According to the dictionary, the definition of an enabler is:

a person or thing that makes something possible. A person who encourages or enables negative or self-destructive behaviour in another.

afflicted

Some of you may or may not have heard about or seen the new Netflix series, Afflicted. It is a series that follows seven people living with chronic illnesses or as they put it, afflictions.  Before I watched, I had already seen many people tweeting and blogging about the series, it seemed that the chronic illness community were not happy at all. So, like with all of these things, I felt I needed to watch before passing judgement or comment.

I managed to watch one episode and decided not to watch any more. I flicked through the second and third episodes but found it upsetting and stressful. As with any of these series, the film makers had clearly got their angle and that was all they wanted to follow. It appeared that they wanted to portray these people as mentally ill. Without directly poking fun at them, that’s how it came across..dismissing autoimmune, neurological illness and just simply labelling these people as crazy.

For me, it was damaging. There is enough disbelief out there about these curious illness that people, including doctors, don’t believe in and this series was adding fuel to the fire. They focussed a lot on what homeopathic treatments the subjects had turned to, making them look hippy and alternative.

They failed to say that they were under specialists and had tried anything and everything to try to find help and a cure. They missed the point that these people were turning to alternative therapies because no one out there is putting money into science to find cures and treatments and even causes for these illnesses. They failed to emphasise the point that these people, like all chronic illness sufferers are desperate. They will try anything to see if it has an impact, no matter how small on their symptoms. It’s interesting to read able-bodied, ignorant people writing about this.

The programme touched on the point that some of the subjects were turning down expensive treatments that were lacking in foundation or evidence. Again, failing to tell people the actual cost and not pointing out – how would these people afford them? So, as so perfectly put by @gnomesChainey on Twitter: “Able-bodied people: They’re turning down expensive treatments! Don’t they want to get well? Also able-bodied people: Why would they pay so much money for unproven treatments? It’e like they don’t care about science at all!”

The emphasis was about the mental side of the illnesses. Why aren’t these people on anti depressants? Well, most of them were. That doesn’t make them crazy. That doesn’t ,mean the illness is in their heads. It means that the illness has affected them so badly that it’s impacting on their mental health too. If you were trapped in your body or your bedroom, if you were being told by medical professionals there’s nothing more that can be done for you, you too would probably suffer and need some help and anti depressants are an option.

There was a line in the series that hit me like a truck: “You can be deluded that you are sick. You can believe that you’re sick when in fact you’re not sick.”

And then, people who know nothing about chronic illness, have started being keyboard warriors and accusing the carers of these people of being enablers. They’ve watched the programme and seen parents, husbands, wives and friends caring for these people and decided that they aren’t caring for these people, they are enabling them. Not helping them get better, enabling them to continue to think they’re ill when they’re not.

Wow.

Now, I know first hand what this is like. Early on in my illness I had someone feel like they had the authority to email my mum and tell her that both she and my dad were not giving me the help I needed. That they needed to give me a kick up the backside and encourage me to get on with things. They weren’t helping me get better. If I hadn’t experienced this, I wouldn’t have believed it. How do people have the audacity to pass judgement? To have the guts to tell people what they are and aren’t doing the right by their child!

People forget that when you live with a ling term illness, we get good at lying. We get good at covering our pain. My pain threshold is pretty high now, I can mask the constant pain and I can act like I’ve got energy when it feels like I’m wading through treacle. My parents are not enablers. Believe me, if you knew my parents you’d know that they would be the first people to “give me a kick up the backside” if they thought I was being lazy.

My parents are quite the opposite. They enable me. Without them, I wouldn’t be where I am now. They support  and push me in the kindest, gentlest ways. They get me to appointments, they see me when I’m struggling and need help, they lend me an arm to hold onto when walking hurts, they give me their shoulder when I need to cry.

I would also like to point out that the majority of chronic illness sufferers that I know, including myself, are our own enablers. We do not want to be ill. We do not want to be relying on others financially, emotionally and physically. We don’t want to be on benefits and out of work. We don’t want to avoid social events, holidays, alcohol, sunshine, work etc etc etc. We are so tuned into our bodies that we notice the slightest change be that an improvements or new ailment.

At times, my parents will tell me to stop. That doesn’t make them enablers. They live with me, they see me at my best, my worst and my ugliest. So they know that I try, every single day to achieve things. But also can see me wilting when I’ve done too much and know what the fall out could be, so, to stop that happening, they will sat, do you think you’ve done enough for today? Maybe you should go and have a lay down? Why don’t you sit down and do a bit more later? This is not enabling behaviour, it’s love and support at the highest degree.

My parents at retirement age had not planned for their 30 something daughter to be living back at home, to be caring for her, supporting her financially. That was not in their plan. So therefore, I highly doubt they would enable to me continue to be like this forever…think about it, it’s just the most ridiculous thing I’ve ever heard. No one would want to live my life or live the life my parents have at the moment. And I’m not saying they would change it because they wouldn’t have it any other way than being there for me in my time of need, but we only manage to deal with it because we live in hope that one day we can go back onto the right paths and live are normal lives again.

I guess what I’m trying to get across here is linked to a lesson I always do on the first day of the school year with my children in class. I get them to squirt out a whole tube of toothpaste and then try to get every last morsel back in using a toothpick. Obviously it can’t be done but they have great fun trying. And then I tell them, the toothpaste is the words we speak. Once those words come out of our mouths it’s impossible to take them back. They can cause unknown hurt and damage to people.

Afflicted is out there now. People living with chronic illness, especially the people featured, have had untold damage done to them. They are experiencing trolling and cruel words from people who have zero clue. One participant tweeted: “ We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

It’s also given people who have no understanding, a programme to watch for entertainment and laugh and jibe and make fun of people who actually need love and understanding.

The wonderful Jennifer Brea who spent five years making the film Unrest about her life living with M.E. has been fighting our corner on Twitter since Afflicted came out. She is a hero in my eyes. In response to a tweet someone put out about enabling people with chronic illness, Jennifer replied: “ Many people with severe chronic illness, if not “enabled/supported” by loved ones, would simply become homeless or commit suicide.”

And I’ll leave it there. She says it all in that one tweet.

#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

 

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

I, Hannah Green

Last week I finally got round to watching, ‘I, Daniel Blake.’ From the opening second I could feel my heart beating faster and stress filtering through my body – the scene was one of a conversation between Daniel and the DWP (Department for Work and Pensions) asking the medical assessment questions. Questions which will lead to you being awarded points which then determine what benefits you are entitled to. It is scored out of 15 and the questions go something like this: “Can you lift your arm above your head? Can you walk unaided for 50 metres? Can you walk to the bottom of your garden unaided? Can you show me how you take your shoes and socks off? Can you empty your bowels frequently?

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Yes, these questions and answers override anything your doctors or specialists have advised or done and if you score less than the 15 points they tell you that you are fit for work and therefore need to apply for Job Seekers Allowance. I cannot tell you how similar Daniel’s story is to mine. I scored 0/15 on my assessment. Zero. Zilch.Nada. So as with Daniel, I had my ESA (Employment Support Allowance) taken away – which I’d never actually received in the first place may I add – and was told to make an appointment for Job Seekers.

The character of Daniel is similar to myself. He didn’t want to give up without a fight because he knew he was entitled to something and that is what we have worked and contributed for all our lives. In the end I cancelled my Job Seekers interview after yet another frustrating conversation with the DWP. I tried telling them that although I was wanting to take my case for mandatory consideration, I was not willing to waste both my own and the people at Job Seekers when I wasn’t actually able to work! This they couldn’t understand. They wanted me to turn up and get advise on how to write a CV before applying – at this point I informed her I was a teacher and knew how to write a CV, again I was told, “In order to dispute your claim Miss Green, this is what we will need to see you doing.” Well I’m sorry, but I am not doing that, I am not willing to put myself through a humiliating session, being made to feel degraded and useless. So the route I am taking is to let the DWP know that my parents will be appealing on my behalf because I no longer have the strength to deal with their red tape and bs.

I won’t give away the whole storyline of the film, but you should watch it. It challenges stereotypes at every turn and gives an insight into how people could quite easily end up homeless on the streets. If I didn’t have my family or the back up of selling my flat, what would I do then? The reality is that once my money was gone, I would be homeless. I am sure the people at the DWP are nice people who are just doing as they are told but to me they are inhumane robots who don’t care, don’t see the real people, don’t consider what medical professionals are saying about your health. They talk to you like you are below them, like a piece of dog poo they stepped in on the street, they let you hang up the phone and cry because you feel so worthless. I wonder what they would do or how they would feel in the same situation?

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There is something fundamentally wrong with our society and our benefits system. I would give anything to be able to work, if I could I’d be down applying for Job Seekers ASAP but I can’t right now and regardless of what my GP, neurologist and ME specialists say, the computer still says no because I can lift my arms high enough to put a hat on my head! I know that the majority of people on benefits do genuinely need them, but I also know there are people out there who abuse the system and get away with it and that angers me beyond belief. All I want is to receive the benefits I’m entitled to so that I can help my parents pay the bills that I’m adding to by being back at home. I want to have some money coming in so I don’t feel totally dependent. I want to be acknowledged as someone who is worth the help and support, not someone who is a scrounger.

I, Daniel Blake is a very powerful film which highlights current issues in a true light, and I can say that because much of what he experiences mirrors what I have to. I have a very dear friend who is also having to fight for her sons rights, if you heard the details of their story your blood would boil on their behalf. The film should be watched by as many people as possible so that these issues are discussed – awareness can only bring positive outcomes. So watch, talk about it and take action if you feel you can. Our next step will be writing to our local MP, the injustice needs to be addressed.

I, Hannah Green feel abused by the system, but I’m afraid that as with Daniel in the film, they have chosen the wrong person and family. We will continue to fight and complain and make my voice heard..I just need to stock up on some spoons before I try again!

Just something for you to ponder on this Tuesday!

See you Friday.

#hairlesshannah