“Man, through the use of his hands, as they are energised by mind and will, can influence the state of his own health” (Mary Reilly, 1962)… That’s my favourite quote EVER. I’m Amy and this is my journey to recover/ manage my health conditions; Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME); Fibromyalgia and Pernicious Anaemia.
I have felt tired for as long as I remember. At school, I was always an anxious child and when it came to exam time, I always felt so ran down and my body would respond to stress in a physical way (colds, acne, sweating, and toilet troubles – just what a teenage girl wants!). At the time, this wasn’t pleasant (as you can imagine!) but I felt fairly ‘normal’ as many of my friends were experiencing similar things and I just put it down to the joys of growing up and it being a funny little ‘quirk’ that my body has. During my A levels however, I became overly stressed about the next chapter of my life – passing my exams and moving away to university. I know this is a shared worry amongst many teenagers but my body’s way of dealing with it was to become fatigued. This wasn’t helped by the fact I developed some kind of infection during this time which was causing me to fall asleep into my revision! Things improved however; I got into university (Woo!) and I soon settled into my new life with wonderful flatmates. I went from doing an undergraduate degree to completing a master’s degree in occupational therapy and I was so excited to start a career in a profession which I feel so passionate about (check out Amy with chronic illness vs Amy the OT: Round 1).
Then I started my job, specialising in working with older adults in both the community and in care homes and I have loved every minute of it. Like many adults in today’s society, I became infatuated with work. A friend of mine once described herself as ‘living to work’ as opposed to ‘working to live’ and I believe that sums up my relationship with work perfectly. I find my job so rewarding and I am extremely enthusiastic about developing the role of occupational therapy within care homes. This didn’t go without a hitch however. To preach the philosophy of my profession, every person must be able to carry out a range or balance of meaningful activities (occupations) to maintain ‘good health’ (Wilcock, 1999). Unfortunately, I did not practice what I preach. At first, I was travelling approximately an hour to work and back and the nature of my job involves a lot of driving in order to visit patients who live a fair distance apart. On top of my working day, I also did ‘extra work’ at home such as reading journal articles so I could become the best occupational therapist I could for both my patients and myself. After a few months of working this way, I had fallen into a pattern of working, sleeping, working, sleeping, and falling asleep on the sofa most evenings. I carried on though and in order to do so, I stopped going to dancing and zumba (hobbies I have had since childhood) and I was dreading having plans at the weekend as I knew that each week I was becoming more and more weak and fatigued and all I wanted to do at the weekend was rest. Like many people with CFS/ME, to be a ‘good girlfriend’, ‘family member’ and ‘friend’ I pushed through my fatigue to carry on going to social events as often as I could as well as doing the usual household chores.
Eventually, it got to a point where my symptoms were worsening beyond those ‘funny little quirks’ I was used to from previous stressful times in my life. I started to not sleep well at night which contributed to my fatigue and my back and joints were aching like I constantly had the flu. Of course, in denial that anything was wrong, I blamed it on the travel to work so I moved bases to be closer to home.
At this time, I was also undergoing many blood tests which confirmed I was deficient in vitamin B12, iron and vitamin D. I began taking supplements and treatment for pernicious anaemia and felt really positive that things were going to pick up for me as many people were telling me stories of being instantly ‘fixed’ following their B12 injections and that they are able to tell when their next injection is due. This wasn’t the case for me however; in fact, I continued to get worse, until one day, I couldn’t carry on anymore. I had to go off sick from work which was really hard for me to accept. So much so that I tried to return after a few days, only to be sent home again and I have now been off for months.
I felt like my whole life was falling apart. I am only in my twenties and I had gone from quickly progressing in my career, presenting at conferences and writing up my research to be published to being a ‘sick person’ who couldn’t stand for more than a few minutes at a time. I had gone from making plans with my partner to buy a house and do the usual ‘family’ things… marriage, kids etc. to no longer being able to do my own housework or cooking. I was aching all over and I was experiencing nerve pain in my fingers, wrists, shoulders, knees, and jaw bone (later diagnosed as fibromyalgia) but the worst symptom has got to be the brain fog for me. From being quite a high achiever academically, it was embarrassing that I could no longer focus to read for longer than a few minutes and not only that, brain fog is scary and frustrating. I was making stupid mistakes such as buying the wrong ingredients for meals, losing items and having difficulty maintaining concentration on tasks. So much so that I remember becoming terrified in a supermarket because I had lost my mum and I felt so dizzy and disorientated that I didn’t know what I was doing.
As is common for people with my health conditions, I soon became very low in mood and was over thinking everything. I had no idea if I would ever improve and I felt like I shouldn’t leave the house due to being off work. Of course, this was ridiculous as I soon found out that trying to do relaxing things and carry on with my life at a healthy pace was vital therapy for my improvement. I had difficulty talking about my health as I felt like I didn’t want it to define me and I was sick of hearing the usual comments like “oh, I’m tired a lot too”, “everyone gets tired”, “CFS/ME wasn’t even seen as a real condition a few years ago”. I know as of yet, there is no test for chronic fatigue but that doesn’t mean it isn’t real. It was torturous thinking over and over about whether it was ‘all in my head’ as all I knew was if it wasn’t CFS/ME; it was something, because I felt terrible.
BUT my health conditions DO NOT and WILL NOT define me. I have come on leaps and bounds over the last few months and I know I am a stronger person now from getting through it. I am doing more socially and I feel ready to gradually return to work. I know everyone is different but things which have helped me recover are, resting when I need to, learning how to pace myself with help from the persistent physical symptoms clinic, medication for pain and the support from my wonderful family and friends. Most recently however, I have gotten over a plateau in my recovery by employing a personal trainer who has now become my friend (shout out to GarryFitness Langler PT!). This is discussed further in my post ‘The start of things to come…’. With the help of Garry, I am learning to change my nutrition to cut out all the sugar and carbohydrates in my diet which were making me feel sluggish (discover more in my post ‘Me and the Ketogenic Diet’). I am slowly building up my fitness levels again and learning how to use exercise to create natural endorphins to help manage my pain. More importantly for me, my mood has improved; I am feeling really positive about my recovery and Garry has given me the confidence to exercise without the constant fear of it causing a relapse. I know I have to be careful not to do too much but I can see I am improving and for the first time in my life, I am enjoying ‘getting fit’! I will soon be beach body ready… ohhhh yeahhh!
My CFS/ME, Fibromyalgia and pernicious anaemia are not the boss of me and I would love to give hope to anyone else going through the same thing or similar as me, although I appreciate that we are all different (highlighted in my post ‘A Piece of the Puzzle’. I may relapse in the future but I may not and that fear is not going to stop me becoming the best occupational therapist, social being and healthiest person that I can possibly be. So why not have a laugh and follow my progress as I keep a blog about my progression, workouts and nutrition with a little help from my amazing trainer, Garry?