M.E Awareness Week: Day 7.

In loving memory of Sylvia Everritt, 23rd September 1931 – 9th May 2019, strong matriarch & welcoming to all. She will be missed by all who had the pleasure of knowing her.

A black & white photograph of Sylvia from the shoulders up. She is in her 70s or 80s in picture.

C.B.T (finally!).

At the beginning of February 2013, I began my course of C.B.T. The first appointment was the introduction, where I spent twenty minutes arguing with the therapist over where appointments would take place. As dad had to work, and mum could not push the wheelchair, we could not travel out to the CAMHS centre. She refused to do the therapy at home, as this was unsuitable. Eventually, we settled on a school appointment, during one of my free periods. She wasn’t happy, but it was the best we could do.

At this point, she asked my parents to leave the room, and she told me what C.B.T was all about. It focused on the cycles of thought and behaviour patterns. Negative thoughts and low self esteem often lead to unhelpful behaviour. The aim of C.B.T was to break this cycle, so that it did not spiral out of control so easily. It was a vicious cycle of depression.

However, the nurse refused to believe that I had depression at all, and simply said it was a low mood. This was cover for “get over it”. I could understand where she was coming from, but for a GP to refer someone as needing help, simply getting over it wasn’t an option. I needed help. Then, after discussing the cycles for a while, she gave me a sheet to take home and read.

I read the sheet the next day, when I had some space and time to think clearly about it. The sheet talked about activity being a good way to diffuse depression, which was a valid point, but not always achievable with M.E. The sheet then talked about bed resting being the worst thing for M.E. According to the sheet, getting out of bed and exercising more would sort the M.E out in no time. It was like the physiotherapy all over again. There was no way that I could possibly do this, as I struggled to walk around the house some days. If I followed the sheets instructions, the likelihood is that I would have another major relapse, and be set back by months.

On the next meeting, the nurse arrived twenty minutes late due to snow, so had to rush through my appointment in twenty minutes. I tried to bring up the point about the sheet being inappropriate to give to sufferers of M.E, but my point was disregarded as irrelevant. The point was instantly dismissed. It was like talking to a brick wall; anything I said was either ignored, or in some cases completely contradicted. After the rushed session, the nurse gave me the task of setting some goals, for short, medium, and long term.

I set goals about being more positive, having a high self esteem, doing myself proud, making changes for people with M.E, being better at pacing myself, and eventually to settle down with a family all of my own. I wanted to use the M.E as a learning experience. I was certainly different to when it all began. These goals would be the best way of challenging the depression.

On the third session, I showed the nurse the goals I had written, and she approved of them all. She was pleased that I had tried so hard with them. Surprisingly she took the time to read them, and listen to what I was saying. She also agreed that I actually had depression, and maybe a few anxiety issues too, that could be dealt with using the C.B.T. It was extremely pleasant, and the session was very productive. This time, she set me the task of recording my feelings when I got marked pieces of work back, including exam results. She told me to perform this on my strongest subject, biology, as this was the easiest one to be positive about.

I did the task as asked, which included the result from the exam in January (a B, pleasingly). However, on the fourth session she was back to her normal self, and barely even glanced at the work I had prepared.

I was in two minds as to whether I continued the C.B.T at all, but there were one or two useful things that I could gain from it, so I stayed as open minded as I could. My GP agreed that when it got to the sixth session, which was a review, that I should say that I was able to continue on my own, and be discharged from CAMHS. This I did successfully, and although the C.B.T hadn’t done much for me, there were one or two small things in place that helped me. The best of these was the ability to think calmly and rationally in a difficult situation, and I was never quite so negative on myself again.

Life was beginning to look up.

The Start of the End.

Even thought I was beginning to feel better, I had applied and qualified for the higher rate of DLA, as I couldn’t walk fifty metres without support. This also meant that I was allowed to have a blue badge, which made car parking a lot easier. It was a good feeling to be supported and listened to, after all my trouble with school.

Now that I was recovering, I had to be extremely careful to resist temptation, and not do too much. It was much harder to rest when I felt good, than when I felt really ill.

What I could use my energy for was thinking clearly about my experience of M.E, and to use it as a learning curve.

I’d learnt how to pace myself much better, and to be more patient with myself. It didn’t matter if I failed at something first time through, there was another chance. I had to accept that sometimes I needed help to accomplish things, and that was nothing to be ashamed of.

I’d learnt that I was stronger than I looked, and tougher too. I could take a lot of pain and illness before I began to crack, and even then, with a little help, I could push through most of it.

The importance of true friendship had become visible to me, as well. It was no good hanging around with someone who was a good laugh, if I didn’t feel that I could trust them. My new found friends were better, and much more trustworthy. I could talk to them about faith, illness, and misery. I also learnt that being a good friend was essential too. I had to be the shoulder to cry on sometimes too. To my surprise, I soon grew to love this role, and found that I really cared if my friends were upset.

I’d also learned that money couldn’t buy everything. It couldn’t buy true friends, or family, or good health, or happiness. Money was nice, and it could pad out the life with small luxuries, but it never did any good. The things of true value were the feelings of happiness and pride, and the love that I shared with friends and family.

Last of all, I discovered that it was OK to be “faulty”. I didn’t care what people thought of my looks, my taste in music, my “geekiness” (which I actually came to love), or my disability. The people I wanted to think good of me were the ones I cared about. If they liked how I was and could overlook my faults, then I was fine.

As well as my past, I looked towards my future. I dreamed of a complete education, and a good career. I also yearned for a relationship, someone I could trust & not feel ashamed of them seeing me at my worst.

***

Unfortunately, mum was still very ill, and had reacted to the tablet used to control her overactive thyroid gland. There was no replacement. She now had to suffer the weight loss and sickness; while waiting to see if there was anything else the doctors could do. There was a suggestion that radioactive iodine could be used to kill off some of the gland, forcing it to produce fewer hormones. This would mean that mum had to be kept in isolation for a month, but once it was over, it shouldn’t trouble her again for the rest of her life. Her health was monitored, and nothing was done for the time being. There was still a chance that the disease would correct itself of it’s own accord. Stranger things have been known.

Still, whatever happened, we would be a family.

The Ending.

I used the DLA I had earned to buy two walking sticks and a mobility scooter. I used the sticks round the house, and for trips out into the back garden. With the sticks my balance was much steadier, and I could walk further. I felt safer too. The mobility scooter gave me the freedom to travel out on my own. I could go to shopping centres, and visit one shop, while my parents went in another. I also enjoyed many trips around the park, where I could lose myself in my thoughts, and take in the views. It took a while to get used to the stares and daft comments of others, but I was soon able to cope with it. The freedom it gave me was well worth any negative behaviour.

I finish writing this maybe not quite at the end, but near it. The M.E is burning itself out, and eventually will leave me. I have at most a year to go, maybe even six months. My returning health is due to many things, including patience, good health care, and a positive attitude. I have many things to go ahead and achieve.

Mum is still ill, and will always remain so. With the support and medical care she needs, she should be OK though.

The end of the road is in sight for the M.E, and maybe this means so for the depression too. Someday, all this will be behind me, and I will be leading a normal life, hopefully as a wife and mother. I have learned a lot, and forgotten little. This has been the hardest lesson of my life; far tougher than anything A-level maths could throw at me (not to say that A-level maths was easy. It was just easier)!

This is what I need for my story; an ending full of hope and one or two loose ends. However, I can assure the reader that all these loose ends will sort themselves out over time. They always do.

Edit: Obviously I didn’t recover as I had hoped. I clung to this hope for far too long but once I had admitted to myself that recovery wasn’t certain, I actually felt a lot more positive about my condition. It took many years following on from this point, but eventually I learned to accept my lot in life and carry on.

M.E Awareness Week: Day 4.

TRIGGER WARNING: Please be advised that this post contains explicit details of how & why I attempted suicide. If you are affected by issues surrounding mental health, please refer to mind.org.uk for help.

From Bad To Worse.

By now mum had become very ill, but over the period of the summer, her asthma was not too troubling. Her overactive thyroid still caused issues, and fluctuated. She often felt tired and sick, but with the care of our good GP, and the endocrinologist, she seemed to be as healthy as possible under the circumstances.

Mum was always very determined to get through illness, and carry on as normal. Even when she was feeling really bad she would get out of bed and continue with the housework. This encouraged and inspired me to do the same whenever it was possible. She was the rock at the centre of our family, who supported and cared for us through the bad times as well as the good. She kept the peace during family rows, and supported me through my friends’ rejection.

Being left alone so suddenly had caused a lot of pain, and the sadness did not ease as the summer passed. In fact, the longer the silence went on, the worse I felt. I yearned for teenage company, face to face, as I had no brothers or sisters. I had AYME, but it was harder to type a message about it than talk freely.

***

At the end of June, I was given an appointment to go and see CAMHS. There, I met a psychiatric nurse and a social worker, who interviewed both me and my parents about the depression.

I explained my situation; that my depression was prominent but stable. I asked for some help controlling it and potentially overcoming it, as beating depression is virtually impossible to do without some form of support. In times of sheer desperation all I could think about was that I wanted the pain and the misery to end that very instant and never come back. It was impossible; the only way out was death. Suicide. I didn’t want it to come to that, but the thought kept haunting me. I didn’t mention this because it seemed silly and pathetic. I told CAMHS about how I felt like a failure, how I was angry about being ill, and how I blamed myself for my mums’ illness. My reasoning was that if I hadn’t fallen ill, and listened to doctors’ instructions, then the stress of looking after me would have saved mum from illness. I left out the part about my friendship situation; I wasn’t comfortable to talk about that. It was still too painful to me.

My parents stayed in the room with me, and were asked about my school and social life, what our home life was like, my behaviour patterns, and possible triggers.

At the end of the session, it was agreed that I should start a therapy commonly used for M.E patients called C.B.T (Cognitive Behavioural Therapy). It looked at thought patterns, and how they tied in with behaviour and emotions. It addressed the issues faced with depression, and aimed to get the patient thinking clearly, logically, and positively. It appeared to be a very good idea.

It was too good to be true. I was placed on the waiting list to receive C.B.T, and waited several months to hear anything at all. Once we did hear something, appointments kept getting cancelled, for lame excuses. It looked like I would never get the C.B.T after all.

There was a more present concern, however, and this preoccupied my mind for the rest of the summer.

The depression wasn’t as stable as I thought it was. I would break down in tears for no apparent reason, without even the tiniest trigger. I would become suddenly very angry and was easily irritated beyond control. I felt permanently useless, worthless, lonely, unwanted, angry, confused, hurt, sad, and downright miserable. I hated myself, and began to punish myself. I would scratch into my wrist with my fingernails and keys, drawing blood and leaving permanent scars. I managed to hide this from my parents by hiding the scar under my watch, a bracelet, or a long sleeve.

I spoke to others on AYME, and although they gave me a little boost, I would soon go back to feeling depressed again. I was trapped in a haunting reality with no escape. It was far too real to hide from, and it was far too strange and embarrassing to talk to people about. I kept my feelings clutched to my chest, where no one could see them, and use them against me. Depression is stereotyped and mocked at by teenagers and young adults. It is laughed off. Yet, for those that have it, it is no laughing matter.

Rock Bottom.

It was a mild and sunny day in July when it happened. I had been feeling particularly low for about two weeks, and the constant misery was taking its toll. I had heard nothing from CAMHS about the course of CBT, and I was still suffering the cold shoulder from my friends.

I was desperately lonely because of this. My estate contained very few teenagers, and those that did live there didn’t know me. I couldn’t even get out for a walk around the park. Loneliness leads to a dreadful, empty boredom that seems to stretch on forever. I began to brood again, and couldn’t stop thinking about the meningitis and the M.E. It didn’t seem fair. The poor treatment at school, mum’s illness, the silence from CAMHS, and my friend’s rejection ate away at me. I couldn’t see a possible way out, and felt cornered.

I remained uncommunicative about my thoughts. I thought that they were shameful, and that if I kept them to myself they would eventually go. Instead, they plagued me on a more regular basis. My parents didn’t know the way I felt, neither did CAMHS, or anyone else for that matter. I even kept it quiet from AYME.

All I could think of was how I wanted this journey to be over and done with. I wanted it to be behind me and forgotten. I was always one for a challenge, but this was too much. I was in too deep this time. The pain, grief, anger, confusion, misery, torment, and darkness was with me all the time, even during sleep. My dreams were sad, and full of friends’ faces- friends I no longer had. When I woke the pain was as fresh and prominent as ever.

I was sat in my room, as usual. There was some music playing in the background, but I wasn’t really paying it any attention. I was picking at the scar on my wrist, brooding, when the thought came to me. There was a way out. It wasn’t pleasant, and it would be regarded cowardly by some, but what did it even matter anymore. The thought was of suicide.

I wasn’t overcome with a tidal wave of emotion. There was no guilt, pain that it had come to this, or even misery that this was how it had to end. I felt numb. Being numb was sweet relief after all my confused emotions, and it was wonderful to feel so calm and tranquil. If anything, the only thing I did feel was hope for escape. The answer to my problems had been provided for me in one, glorious brainwave.

I ambled down to the kitchen, trying to look as aimless and inconspicuous as normal. I didn’t waste the time to write out a note; not when the end was so close. I pulled a glass out of the kitchen cupboard, and filled it with water. Then, I reached into the cupboard, and got the tablets. I wanted to do it this way because I would fall asleep, and my body would just forget to wake up. I would slip away quietly, in a warm haze of drugs.

Mum knew something was up. There was an atmosphere of calm that was unusual, and also an air of determination, something I had been lacking for a long time. She came through to the kitchen, and before the first pill had even reached my mouth, the packet had been wrenched from my hand, and the water was falling down the drain.

I tried to fight back, but all of a sudden I couldn’t seem to find my motivation or enthusiasm. I was back to the dark, lost way of life. Instead, I crumpled up into a heap, and cried. They were tears that had been held in for years. They were tears of frustration, and anger, and pain. They had been bottled up for years.

As I sat there and cried, mum phoned the CAMHS office for help, but apparently there was nobody in and help was refused. I was beyond caring. I was such a failure that I couldn’t even carry out suicide, and I didn’t want some nurse questioning me about it.

It would be a long and tiring haul. It would be endless hard work. However, I had to beat the depression. I couldn’t give in to it now. Billions of people suffer illness, deaths of friends and family, famine, poverty, war, abuse and much more besides, and they all pushed through it.

So I would too.

I would need support, love, care, and trust, but I would get there. It would just take time.

An Unconventional Medicine.

The difficulty in knowing how to deal with poor mental health is the fact that everyone’s case is very individual; everyone has different triggers, responses, and coping mechanisms. For me, my strongest coping mechanism is to write.

Writing about an upsetting situation helps me think about it logically and clearly. Converting emotions into words forces me to think through what happened stage by stage and piece together which bits are the most problematic. Watching the words appear on the screen in front of me helps me rationalise my reactions, allowing me to adopt the perspective of the reader reflecting on the choices of a character in a book. I don’t necessarily publish what I write in response to a tricky scenario either, although sometimes a passage will grow and develop into something I’m comfortable with others reading.

I picked up on this technique when I was having frequent accessibility issues at a building I used on a daily basis while at university, which despite my feedback and advice continued to occur, becoming increasingly frustrating as the months passed. Often I would come out of the building trying to hide the fact that my cheeks were flushed and I was shaking with anger, so nonchalant and disinterested was the response of the members of staff. I took to keeping a record of accessibility issues, when and where they occurred, and if possible who was responsible for an issue. About once a week I would submit this alongside an email reiterating my frustration to a more senior member of staff, but when that didn’t have an effect I took it to the highest level of management. The problem lingered but lessened significantly, and on my more recent visits I haven’t had any difficulties at all.

What I noticed was that keeping a record and writing an email about the incidents greatly helped calm me down, and while still annoyed and aware of the problem, I wasn’t fixated or brooding about it constantly. I decided I’d try this technique with other problematic scenarios, and was surprised to find out just how effective it was. The many issues I had faced at school concerning a lack of both physical and emotional support formed two blog posts, and my Twitter followers are bombarded with photographs of blocked access routes as I come across them. I found that while my memories of these cases are far from positive, I didn’t revisit these memories as regularly as I once did, and overall I simply felt happier. It worked.

If you want to try writing as a coping mechanism for difficult situations, it’s important to remember that no one ever has to see it. Computer files can erased, and paper can be shredded. It doesn’t need to be coherent, grammatically correct, or full or delicate vocabulary. It won’t work for everyone but it did for me, and it helped me put together something I feel truly proud of. Writing is my therapy.

The Clouds Behind the Silver Lining.

Given the health issues I have had throughout adolescence and early adulthood, it is no surprise that I suffer from chronic depression. Some argue that since depression is so commonly experienced among chronic fatigue syndrome (CFS) sufferers that it is a symptom of the condition, and in our cases not a disease in its own right. I find it difficult to fathom how this makes much difference as both conditions are treated by trying to control the symptoms, and not by targeting the cause of the diseases which are largely unknown.

Whatever the case may be, I find the depression one of the most difficult things to cope with surrounding my condition. If I am tired I go to bed for a bit, and if I am in pain I take some pain killers and have a warm shower. Even if these do not eradicate the symptoms completely, in most cases they will lessen them to a tolerable level. However, once the depression rears its ugly head there is very little I can do about it, and it quickly escalates until it becomes all-consuming and inescapable.

A lot of non-medical experts, and even a few supposed experts, have told me that if I exercised more I would be happy. If someone can be happy while experiencing exhaustion, intense muscle aches, joint pain, dizziness, nausea, and headaches for several days following such exercise they honestly deserve a medal.

One of my most severe periods of depression came during the summer of 2012; I was 16 and was supposed to be enjoying the long summer months before returning to education to start my A-levels. During that time the peers at school who could loosely be called friends barely made any contact with me despite having multiple opportunities to do so. My school were arguing about whether I would be allowed to use my wheelchair around school, and whether I could have someone to help me get around as I couldn’t push my own wheelchair, nor could I afford a powered one. The extensive periods of free time lead me to brood over the negative aspects of my life; I had been ill for 18 months at this point with no signs of improvement. I felt that my teenage years, the time all the adults told me was so precious and that I shouldn’t waste a second of, was being taken away from me.

It was a series of minor negative events experienced in close proximity to each other that pushed me too far, and I tried to commit suicide. When I had finally been deterred from doing so by my horrified mother, the mental health service refused to help, and unable to get to see a GP we were left alone, reminding me all too well of the meningitis.

After the suicide attempt I began to self-harm, and it quickly became an addictive and obsessive behaviour. The mental health support systems available in my area on the NHS were appalling, making their services as inaccessible as possible, both physically and mentally. When I finally managed to see a mental health worker the treatment I received was awful, and I came out of the supposed therapy more depressed than when I went in. Fortunately a local charity provided a counselling service of a much higher standard, which was friendlier and more accessible. By the end of the therapy I received from them, and alongside the introduction of anti-depressants that worked well alongside my other medication, I reduced and finally stopped self-harming altogether.

Although I have had brief relapses into self-harming, none of these periods have been as serious, nor lasted as long as before. I still bear marks on my wrists and legs, and after much deliberation I have chosen not to cover them up with tattoos. I fully understand why people might choose to do this and hold nothing against it, but I do not understand why I should be made to feel any less of a person due to the symptom of an illness, in the same way as I don’t hide the walking sticks I use inside of my flat.

I still suffer from depression, and after a recent bout of very serious ill health I have had to increase the dose of my anti-depressants as a temporary measure, until I am at a more suitable time and place to address the issue. However I do not feel as if it controls my life as much as it did, and so far I have not attempted suicide again, and at least my self-harming tendencies have significantly reduced.