back to life

Carole vs CFS

A lot of people ask me how I recovered from Chronic Fatigue Syndrome (CFS), honest answer? I don’t know. But I do know it wasn’t just one thing that helped me come back from feeling like my life had fallen apart. It took 7 years from the first signs of illness to declaring myself recovered.

I first became ill in 2005; I had an asthma attack on the dance floor while on a ward Xmas do. I had exercise induced asthma diagnosed while training for a half marathon. It was very mild and I rarely needed my inhaler. The attack wasn’t severe or life threatening but it did frighten me a bit. A few days later I developed a flu like illness and felt like I’d been run over by a bus.

After a few weeks it soon became apparent that I was not recovering from the extreme fatigue that I was feeling. I was trying my best to function, looking after my boys and stuff around the house, but I was unable to return to work. I was a full time senior staff nurse in a very busy Bone Marrow Transplant unit (BMT).

Weeks turned into months with no improvement. Fortunately I had a very supportive GP who listened, did blood tests and referred me to a CFS clinic. Blood tests revealed nothing except what I already knew about my exposure to Epstein Barr virus (from glandular fever as a teenager) and CMV (probably caught from a patient on BMT resulting in viral meningitis), this viral load could have contributed to my condition. The CFS clinic was useful for learning how to pace activities and for meeting fellow sufferers, but due to lack of funding the appointments were limited.

So before I knew it I had reached the point where I’d been off sick for a year and my half pay was about to stop. I needed to go back to work or end my contract. I tried to get my pension but as I couldn’t prove I was permanently unwell I wasn’t successful, in hindsight now that was probably for the best. So instead I was dismissed due to incapacity. As you can imagine I was devastated to give up a career I had worked so hard to achieve.

As we know CFS doesn’t just come with extreme fatigue, there are many other symptoms to contend with. In a bid to be useful I’m going to write about the symptoms that I experienced and how I tried to cope with them and somehow minimise them.

Let’s start with the most obvious – fatigue: It’s so very hard to describe the overwhelming fatigue that a CFS sufferer feels even after doing the smallest task. A lot of the time it feels impossible to be able to do any activity at all. Some sufferers find that they can’t even get out of bed. Fortunately for me I found that I was able to force myself out of bed. During this time I shared custody of my lads with my ex husband, we had every other week each. In the weeks I had them I had to get out of bed and at least try to function. I would do what I had to do in the morning, crash out during the day and try to get going again when they got home from school/college. In the weeks when I was on my own I still got myself up and dressed, even if I couldn’t do anything else I felt I had achieved something.

As time progressed however I found it necessary to adapt this, I was getting up, but sleeping most of the day away downstairs. Or if I was feeling a little more energetic and doing too much causing the boom and burn effect, usually resulting in me being almost comatose for days later. I know this is the buzz word these days … but mindfulness is the way to go and I was doing it before it was trendy! I needed to analyse every I was doing, why I was doing it, did I need to do it and did I need to do it in the way I was doing it. Activities needed to be limited to time chunks, 5 minutes, rest, 10 minutes, rest etc. It was absolutely essential to listen to my body and recognise how each activity and the time spent on it affected my body. The next stage was to limit the time I was sleeping during the day- after doing any activity I felt wiped out and usually felt like I needed to sleep. I found that setting a alarm helped to limit the time I slept. It didn’t mean that I only allowed myself one nap a day, I would do this throughout the day setting the alarm each time, allowing myself 20 minutes sleep each time. This wasn’t a quick fix and took many years, sometimes I thought I’d cracked it and would foolishly do too much and wham feel like I’d been hit by a sledgehammer. But on the whole things started to improve, albeit very slowly.

Another horrible symptom was pain – bone pain, muscle pain, headache. I took over the counter meds such as paracetamol and Ibuprofen and had varying relief. Using heat was very useful for the bone and muscle pain – hot water bottles/wraps, soaking in a warm bath. Having any kind of massage therapy was excruciating for me, so I would recommend thinking twice about that. For the latter part of my illness I actually lived in Turkey and found the hot weather had a positive effect on my bone pain, but I appreciate that’s not a option for everyone. Also anyone who knows me well knows how that period of time turned out for me!!(see my blog if curious). But getting out on a sunny day, even if only in the garden would be most beneficial. As a lifelong migraine sufferer it was hard to tell at that time if I was having a migraine or if it was a headache set in for the day, so I tended to use the same approach – ice packs, pain killers, rest and plenty of fluids. But it’s also important not to assume all symptoms of pain are caused by CFS. I was experiencing really bad eye pain, I ignored it for a while thinking it was due to CFS. A trip to the opticians revealed that it was due to severe eye strain and I needed to wear glasses all the time, I was not a happy bunny and signed up to a contact lens trial within 2 months and rest is history. Another time I had chest pain, again I ignored it until it became severe – I had pericarditis which quite quickly progressed to myocarditis. Seek advice and don’t assume.

Brain fog is a most distressing symptom, especially if you are used to thinking on your feet, making important decisions about patient care, staffing, bed management etc, multi-tasking was my specialist subject!  Also unbearable if you are an outgoing and chatty person who could talk for England. I found myself unable to think of names of people, everyday objects etc, I couldn’t hold a conversation because I had forgotten what I was trying to say half way through my sentence. I lost the ability to spell the easiest of words. I wandered around the house aimlessly having forgotten what the hell I was doing. I guess the way I dealt with this was to give myself a break and stop beating myself up about it. Initially I would torture myself by trying to remember the things I had temporarily forgotten, (remember at this time there was no Google on a smart phone or Alexa to ask!). I’ve always had a fetish for notebooks and post it notes, so thankfully I had plenty of those to scribble stuff in to improve my memory and give me clues around the house. I’ve always been a good listener, but I became an exceptional one as it was better to just listen rather than attempt to join in the conversation….torture but necessary for my mental health.

With this illness inevitably depression will become a factor. For me CFS had a devastating effect on my life and everything it stood for. I lost my career and quite soon after that my home. I became a shell of my former self and felt like a big failure. Added to that I was unable to exercise so I also gained weight, which I found very hard to deal with. I needed to take an antidepressant during my illness and you shouldn’t feel bad about it if you need to as well. Think of it as replacing a vital chemical that you don’t have enough of. It’s not forever. I found it beneficial not to be cooped up in the house all the time, if the weather was good I sat out in the garden, I took friends up on their offer to pick me up to go out for a drive or a coffee. It doesn’t need to be a full day’s outing because a lot of the time you probably won’t feel like it, or be able to cope with it. As my fatigue management improved I was able to do gentle exercise such as swimming, I needed to be strict with the length of time doing it, but once I’d rested afterwards I noticed an improvement in my mood.

Now comes the flowery part…. having CFS forced me to look at my life differently. I was super busy in my life: children, family, nursing career, brownie guide leader, and loads more due to an inability to say no. I worked full time and did bank shifts on some of my rostered weekends off. I rarely allowed myself any down time, I was constantly on the go doing something. Due to be so incredibly fatigued most of the most I learned to appreciate the smallest pleasures…. sunshine on my face, flowers, birds singing, texts from friends and family (talking on the phone wasn’t always easy to cope with), the smell of fresh coffee, lots of little things, too many to list but you get the gist.

Specifically for me, one thing I think that did help me recover was stopping trying to get my pension. I appealed the decision not to give me my pension twice. Each time I wrote a report and tried to get expert opinion that this condition was permanent and I wouldn’t get better. Looking back I believe that it contributed to my mindset that I was ill, I was constantly having to prove that I was suffering from the symptoms that I’ve written about here, I was banging on about how it affected me on a daily basis because that was what the panel needed to hear. In my daily life however I stopped talking about it because I got fed up listening to myself and who knows what my friends/family must have been thinking. I had one appeal left and I made the decision not to use it. I don’t know if it was a coincidence but from then I noticed a significant improvement in my wellbeing. I was able to apply to go back to university to a back to nursing course, and a year later I was back in the workforce. By writing this I’m no way saying that this illness is all the mind, but a mindset can have a significant effect on the way a person may deal with their condition.

This whole experience has changed me, not personality wise though … I’m still a little bit crazy! But I am more protective of my time, I have learned to say no. This doesn’t mean that I don’t do anything, far from it. I am probably nearly as busy as I was before, but now I choose carefully what I do, I consider everything before saying yes to anything. Most importantly I still appreciate the little things in life. I still pace myself sometimes especially if I get a viral illness because I am always scared of developing CFS again.

I hope this page is useful, I didn’t write it as a “woe is me” or “look how bad I had it”, I just wanted to share what happened to me and maybe bring some hope to people dealing with this silent hell.