Happy Monday to you all once again and welcome to the final article in the series of “THIS WEEKS FEATURES” which looks at the treatments I have had.
If you have a diagnosis of M.E./CFS then you will know that it comes with a lot of stigma but also a lot of poorly educated healthcare professionals. I’ve met and spoken to many people who have been advised on or even put through inappropriate treatment strategies simply because no one really knows what should be done.
Much like the other conditions we have covered, this one has no cure either and not a lot of treatment/management options. There is also quite a bit of debate among healthcare professionals as what is the best way forward with managing M.E./CFS, but what I’ve learned from the consultants and team I have been under is that it is definitely not a “one size fits all” approach.
Obviously, the disease effects everyone differently so I thought it was fairly obvious that each person should be offered treatment and management approaches that suited them, but this is clearly not the case.
I’ve met people at group sessions who were prescribed anti-depressants because “that’s what their GP always did for M.E./CFS” or were put through exercise classes because “it’s just about building up a tolerance” (and seriously, the graded exercise approach is dangerous, so if this is what your GP or other healthcare professional is suggesting, I’d a) do your research and b) get another opinion). Some people I have spoken to were put on things such as vitamin D or vitamin B12 for no clear reason. Bizarre.
To be honest, I had no idea what was in store for me when I got my diagnosis (I’ve written a bit more it here and here, if you’d like to read it) and no clue about what I was going to do to get better. I did a little bit of research but found it was a complete minefield so steered clear, and it wasn’t until I was under a specialist team – which I didn’t even know existed – that I found out more.
I’ve written about the treatment and management strategies I have been through below to shed a bit of light into it all. Some of them you may think are obvious or simple but trust me, it wasn’t until someone explained how they really worked or how you really did it that they became more useful. Some of them probably don’t even look like they would be classed as a treatment or way of managing this disease, but they worked for me and that is what is important with it.
Signed Off Work
Yep, I know what face you are pulling or the question you are asking yourself. Yep, this is a form of treatment/management. Why? Because it involves taking you out of a situation that is contributing or causing the M.E./CFS and/or its symptoms, allowing you time to rest, relax and recover.
I was signed off work for 2 weeks when I got diagnosed, and this was by my trusted GP. I can’t remember if they wanted to do it for a longer period or if it was just a case of me going back towards the end of those 2 weeks if needed and being signed off for longer. But what I do remember is that I didn’t like or even want to be signed off work – work was what I did everyday, I enjoyed it and (surprise, surprise) I remember feeling guilty to work about it.
My GP told me that even though the 2 weeks were for resting, I was to try and do something like a little walk everyday to prevent me from loosing all of my resistance, and to only go to sleep when needed to prevent me from loosing a relatively normal sleep pattern.
It wasn’t until these 2 weeks that I realised how exhausted and unwell I had been, and I certainly used it as the opportunity to rest in order to return to work. Whilst being signed off is not even an option for some people, it is normally the first thing that will happen when you are diagnosed or having a bad flare. The only thing is that you don’t want to fall into a pattern of having repeated episodes of sick notes, because this just indicates that something needs to be done at work in order to help you maintain your life there.
Phased Return to Work
In combination with being signed off work completely, my employer arranged an occupational health assessment to help me return to work. Things seemed to fall into place because also at the same time I went to have my first appointment with the specialist fatigue team and they provided my employer with a really detailed letter on how to facilitate me back to work.
At the time, it was deemed more appropriate for me to work part-time or at least part-time clinically, so I was put on a phased return to work that started at 2 days a week and built up to 4 days over a period of about 3 months. It was my decision to push to the 4 days and I even got back to working full-time, something that is my proudest achievement – I’ve managed it for nearly 2 years now.
Phased returns to work are actually a really good way of assessing how much you can do – for me, I had the option to drop a day at any point if it was too much or extend a certain period too. Most GPs can advise on phased returns to work, but I think because of the nature of my job I had to go the official route of the occupational health team. If you’re company or employer has one, then totally use it – they are incredibly helpful (most of the time – you can read about my experience here) and if you’ve got something like a consultant or specialist team letter advising on similar things, then you can’t loose. I will say that the only downside is that some places of work may not be able to accommodate phased returns and I don’t even think they are legally obliged too – even occupational health assessments or recommendations can’t be made to be stuck to.
They also work well after surgery, and after my last operation in may I underwent one but it was a bit “unofficial” – instead of doing a build up of days over time I did a build up of activity and duties.
I’m going to include this one here because even though it wasn’t really part of my treatment or management strategies, it opened my eyes. I attended 6 sessions that were in a group format all about M.E./CFS and how to manage it. I had no choice but to attend in group format, which was unfortunate, because I actually don’t like group things. But even though I wouldn’t say it offered much in the way of new or unique treatment/management options, it did give me an insight into how my M.E./CFS could have run.
There were people in my group who were a lot worse than me, as well as others who had fatigue associated with other conditions. There was a mixture of ages, genders and even mindsets and it’s the mindsets I want to touch on.
Personally, I believe if you have the right mindset (usually a positive one), then you can overcome, cope and deal with most things, whereas I was coming across people who’s mindsets were the complete opposite and lacked “fire” and passion. It was sad because they almost seemed completely beaten by M.E./CFS and living with it, but it made me really realise that I didn’t want to be not able to work or enjoy things, and I ended up being able to take on board the things that were discussed in the group a lot better.
I will say that group sessions are good for one thing, and that is support. It’s unlikely that you’ll ever be in a situation where you will be surrounded by numerous people all experiencing similar symptoms.
When you read this word, like me you might think that it’s just related to doing things at a slower pace. Which in a way is true, but in the context of M.E./CFS it’s about understanding how much activity you can do throughout a set period of time.
The best way to understand this is to have a table with lots of boxes in, and each box represents an hour in the day. You live that day and fill in those boxes in one of four colours – RED for high level activity (e.g. running, cleaning), YELLOW for low level activity (e.g. watching TV, walking) and GREEN for restful activity (e.g. reading, meditation) and BLUE for sleep. You then count how many hours you were active for and work out the average during the week or even the day, and that becomes the maximum you should do. So let’s say the average is 6 hours – this means that each day you should only be active for 6 hours. It’s only when you have been able to withstand the 6 hours without any problems that you would then increase it.
It probably doesn’t make too much sense in writing, but there are charts and tables you can download or even make to help make it clearer.
It also should give you an idea of how much more light or restful activities you need to do, or if you’ve done it over a longer period, how much you might get “payback” for heavier activities or if there is a particular pattern.
To apply it to the real world, it basically centers around having more rest and lighter activities, for example instead of hoovering the whole house in one go (a typical RED colour activity), you should do one room at a time and rest for x amount of minutes so that you recuperate some energy.
In my line of work, pacing isn’t really applicable, so I found it hard to explain to my line manager and even harder to practice. At work, restful activities like having a break or meditating were simply impossible, and you there is no way of making treating a patient any less of a heavy or high activity.
Although again this was tricky in my line of work, there were some things that I was able to do to make my job less clinical and therefore less intense. A bit like being signed off, having altered duties can often be one the first things that can be done to help manage M.E./CFS symptoms. Typical examples are working from home, doing office-based work or switching to less busy shifts.
When I was able to have altered duties at work, all that really happened was I was in clinic more often, which meant I still treated patients but just in an outpatient environment, and I took on a lot of the admin work (referral letters, managerial processes etc). However, I wasn’t able to do this for long and it also depended on what staff were available – if we were short staff then there was no way I was just going to sit there and not help out. The other problem was patients always need us, so if there was an emergency situation or someone a consultant needed seeing, you couldn’t say no.
I also found it really hard from a team point of view, because I felt a bit like a spare part – everyone else was out there doing their job and I was struggling to do mine. Especially when there were times where I’d have to say no to things or that I physically couldn’t do something, I felt like an outsider. And not everyone in my team (e.g. bank staff) knew what was going on with me, so it was difficult to explain why I wasn’t on the ward and such.
Altered duties works better I think in a non-clinical, non-healthcare setting – I’d have rather done a longer phased return or something similar. I was given the opportunity to have a dual role where I could have set clinical and non-clinical days, but I had to wait until a suitable job became available and then I had to apply and interview for it like everyone else. Spoiler alert: none came up.
Whilst I didn’t exactly have a bad diet beforehand, at the height of my M.E./CFS I did make a few diet changes to help with energy levels. I stopped drinking tea (which I never drank a lot of anyway, but when I was really unwell and pre-diagnosis, I was relying on the small caffeine hit to help me through the day) and switched sugar-based snacks for healthy alternatives. I also made my lunches more substantial – since I’ve been older I’ve never really wanted big lunches at work, often settling for soups or salads, but my husband packed them with protein and carbs so I’d have more energy throughout the day.
Whilst the above methods definitely helped improve my M.E./CFS, the biggest thing that helped was actually getting my pain under control. We found that there was strong link between periods of high pain and M.E./CFS flares.
M.E./CFS recovery is a long road and in the initial phases there were days that were better and worse than others, but by taking things slowly and carefully I was able to get back to doing pretty much everything I enjoy. Earlier this year I was even lucky enough to get a dual role, meaning my clinical days are much less.
If you have tried anything else for your fatigue or M.E./CFS then let me know – I’d be really interested to hear about other methods!