Hi, I’m Tricia and this blog is the story of my successes and failures in life in general as well as in managing with CFS/ME [EDIT: and kicking CFS in the goolies!]. As the condition has shaped so much of my history (although my troubles didn’t have a diagnosis until more recenlty) it deserves some credit, but it is not going to hold me back. I know my adversary and I can make it, if not my friend, at least a colleague you can rub along well enough to get the job done (even if you wouldn’t want to be seen with them outside work).
To start with, here is the condensed story of my life so far, and the health ups & downs that lead to my diagnosis: –
In the beginning….
I was born in 1978 and for the most part lead a fairly average life (with the general ups and downs that it brings through school, moving house, moving school, friends, and life in general) until my year out between A-level’s and Uni. In the April of that year I went to work at the Ideal Home Exhibition in London’s Earls Court and, like any 18-year old away from home for the first time, burnt the candle at both ends. I came back from that feeling lethargic and generally ‘unwell’. Shortly after this my beloved horse died violently and, as I had shaped the course of my whole year out around competing this horse, my life fell apart and I went into a black hole of grief for a good couple of weeks.
I took a summer job working as a groom for a family in Hampshire, where I was responsible for the care of 3 ponies which should have been a riot, having fun with the kids, splashing about in the pool and enjoying the hot, hot summer. Instead it felt like I was struggling to move through semi-set concrete all the time. Repeated trips to the doctor just produced comments like “you just need to recharge your batteries”, I didn’t know what was going on.
In the October I went away to Uni and kept getting chest infection after tonsillitis after upper respiratory tract infection. I somehow managed to struggle on for the first year and the first term of the second year before yet more infections and an allergic reaction to penicillin, brought me to see a different doctor who saw “repeat infections, lethargy, student” and came to the conclusion of Glandular Fever.
The End of the Beginning…
That was a revelation, realising that there was a reason why, at 19, I was needing to go up to my room and sleep during my lunchbreak and why my body felt like a lead weight. I deferred my place at Uni for a year to recover.
When I was feeling a bit better I started to do some temp work for a week at a time, gradually increasing the amount I could do and increasing my admin skills at the same time.
Things continued ok for a while, I still was more prone to infections than most and I couldn’t shift the 4-stone I’d put on during the worst part of my lethargy. As time went on I was finding it harder and harder to keep trying to “be normal”, to have a full time job and manage to exercise and diet to loose the weight. The time between infections became shorter and there became a clearer pattern of increasing the exercise I was doing and coming down with an infection a few days after.
Still, I struggled on after many more inconclusive visits to the doctor, thinking all sorts of things and wondering if it was just that I’d got used to doing less physical activity like all the doctors said. Had I just become a lazy person? But then, that didn’t explain the continuing infections, nor the feeling that every time I felt good in myself and started, very slowly, to do a bit more, I would get an infection and take a step backwards.
The Beginning of the End…
In December 2007, after a lovely holiday and feeling the best I’d felt for a long time (I was just planning to go swimming once a week for about 10-lengths a time to start getting fit) I developed a horrible infection – a viral sore throat which left me with ulcerated “non” tonsils (I had them out in 2001 – good riddance) and a nasty bout of Post Viral Fatigue (PVF).
This was the worst I’d felt since I’d had Glandular Fever. Remembering how utterly depressing it had felt then I made sure that every day I got up out of bed and went downstairs and sat on the sofa. If it was a good day, I got dressed. When I was feeling particularly robust, I had a supervised bath and if I was feeling up to it, my mum washed my hair. Then I would take the dog for a walk. Later, I would be able to wash my hair myself and eventually risk taking a shower. Fortunately I was back living with my parents at the time or I don’t think I’d have been able to look after myself.
During this time, one of the blood test results showed an abnormal thyroid function. It was not enough to treat, and they weren’t sure if it was just a reaction to the PVF. I had repeated blood tests every three-months to monitor it.
A Brief Reprieve…
I gradually got stronger and, after three-months I started back to work. I was living in Bath mid-week (to keep work happy) and traveling back to Wales at the weekend to the parents. I didn’t want to take on a tenancy in an area I didn’t know so the mid-week option was the best there was.
To start with I would get up at 7am, be in work for 9am, finish work at 5pm, be home by 6pm, have a quick dinner and be in bed, and sleeping soundly, at 7pm. That was all I could do. On a Friday I’d get home, pack the car and drive to Wales (with many sleeps along the way) and then drive back on Sunday afternoon.
Gradually I managed to do a bit more in the evenings but I still found going out and doing anything energetic or mentally stimulating very difficult. I went for 18-months with little more than a cold. I started walking to and from work. Things were going ok.
The Road To Discovery…
Then everything started to take a turn for the worse. Not suddenly, but a gradual slide back to increasing fatigue.
It got to the point where I was almost falling asleep at my desk – prompting a trip out for yet more strong coffee – and using my lunch hour to have a sleep. On the hard, not at all comfy, floor. Fortunately I had a locked office to myself. This of course meant that I would often work later in the evening to make up for the lost time. I found it difficult to concentrate. I found it hard to follow conversations. With hindsight I probably should have been signed off a good few months before I was.
In the July of 2009 I went on a three and a half week trip to the US. I really shouldn’t have gone. I was so tired and really not well but I was going with someone else and didn’t want to let them down. I also thought that a nice long holiday would do me some good.
I got back from the holiday at the end of July and saw my doctor on the 3rd August to get the results of my latest thyroid function test taken in June. Finally, my T4 (thyroxine) levels were low enough and my TSH (Thyroid Stimulating Hormone) levels were high enough to be able to start me on treatment. Basically, my pituitary gland was shouting and screaming at my thyroid gland to make more thyroxine but my thyroid was drowning, not waving.
I was started on a low dose of Levothyroxine and at this point my body gave up and said “there is something wrong, I’m not going to survive on coffee and willpower any more” and I literally couldn’t function. I was signed off at the end of August.
In September I had a repeat blood test to see if my thyroid levels were normalising and my doctor said they were. I was in a state because I had got worse rather than better. The treatment wasn’t working.
My doctor diagnosed me with Chronic Fatigue Syndrome (CFS/ME) and referred me to the Adult CFS/ME clinic at the Royal Mineral Hospital in Bath.
To say I was in a state about the diagnosis would be an understatement. I thought that my life was over. The “popularised” images of people who have CFS are of people who are severely limited by the condition. Fortunately I was already scheduled for some counseling through work to deal with the diagnosis of the Hypothyroidism so I was able to talk about the CFS as well.
Through both the counseling and the support of the CFS clinic I have managed to come to terms with the diagnosis and been able to learn techniques to help me manage my energy so that I can start to see my way back to leading a more “mainstream” life.
I’m now at the point where I have found the mental resilience to start out with my own freelance PA business which is going from strength to strength; I’m feeling stronger physically than I have in a long, long time; and I am finally starting to shift the extra weight I gained during the years when exercise was such a struggle.
In one way I think I had an easier time dealing with the diagnosis because I had such a long time (13 years) between actually contracting the condition and being diagnosed. The diagnosis was a positive, rather than a negative: a way to get out of the pit I was in health-wise. I had had the symptoms for so long without explanation that this was finally a way to be able to work with my body and not against it.
And So The Story Begins…
This blog is partly a way to help me get my head round how I deal with having CFS and the ways in which I have to live differently to be able to achieve all that I want to do and it is partly something that I hope will help other people suffering with CFS/ME.