But from June, I was enrolled on the PRINCE Secondary Trial. It was a trial where I had CBT
sessions – but the sessions were based on a special form of CBT which told me I had false
illness beliefs, and in every session I was given an exercise programme to do. The booklet I
was given said, “The best advice would be to try out this practical approach because nothing
will be lost by trying but much may be gained“. I was told to increase my exercising – so to
go on a 5 minute walk, twice a week, instead of the once a week I was able to do. I did what
they said, but was starting to feel more unwell than before, and told my therapist – she told
me to meditate more, rest more in between (although that was all I was doing in between
anyway!), and continue the walking. So I did. Then, she told me to increase it to 5 minutes,
three times a week.
I was given a booklet that told me that it was my beliefs that were perpetuating the illness,
that even if I felt unwell or got pains, or wanted to cancel plans, I should rethink it, and not
think negatively. I was having more and more “bad” days but kept going. The message was
that even if I got pains or dizzy or got tired, it was my body getting used to new patterns and
doing more exercise and I shouldn’t look into it too much.
I booked a trip to wilderness festival, thinking, well even though I am feeling more and more
ill, at some point my body will get used to its new pattern. and I still wasn’t as bad as I was
last August (when I first got ill) so I continued.
During wilderness, I became very unwell and had to come back early by cab all the way from
Oxford – by this point my body had gone numb and I was in tears. I came back from
Wilderness, and I went into hospital a few days later and was told I should get out of my
wheelchair and be more active. When I told them I often had a lot of pain in my arms, which
is why I couldn’t do a lot of things and needed help with having a bath, they told me to do
weights.
By this point in the trial, I was too unwell to travel to my appointments so was having
phone appointments – I was told to do a 10 minute walk. During the walk, my legs wobbled
and stopped being able to work properly. Despite this, I desperately tried to push through it
and did a yoga session a few days later (the trial therapist knew about the yoga alongside
the walking), as I had been told that that pain wasn’t a big deal. And that was when my body
finally collapsed in exhaustion. I had shooting, electrical-like nerve pain throughout my arms
and legs, it was terrifying and I couldn’t sleep with the pain. I had palpitations, my body
started shaking and twitching, I would burn up one minute and be freezing cold the next – I
was feverish for over a week.
I got even worse orthostatic intolerance, which means I couldn’t tolerate being upright or
even sitting upright, sometimes even for more than a few seconds without feeling nauseous
and dizzy and shivery. I felt sick all the time, found it difficult to tolerate food (or even sit up
to eat) and the headaches were there all the time. My brain felt foggy. I became sensitive to
light, and sound, and had to lie in a darkened room or I would get palpitations. The smallest
thing I did- even eating a few spoons of breakfast, meant I had to lie down for hours to
recover. I needed my mum and my boyfriend for every single thing. I couldn’t walk a few
steps or type without horrendous pain. I couldn’t talk more than a few words or the
exhaustion was too intense. I could drag myself to the toilet next door a few times a day,
and and that was enough to make me more unwell. All in all, I was back to how I was last
year.
This relapse happened in the middle of August. It is now a month on from that, and
although I am a little better, I am still very unwell – it has taken a lot out of me, lying down,
to write this on my phone. And I know I will feel very unwell after this, and am feeling it
now. But I am writing all this, however horrible it is to talk about, because I want people to
know this is the reality of how M.E can be – that a young woman, who was getting better by
herself with rest, and who had already lost so much, can be pushed into this state by being
told that they should just “push through it”. And I also have Lupus, and the complications
which arise from that.
I have had to have complete bedrest. I have felt so down, and upset, that I am so unwell
again. But I learned a valuable lesson. It was only after I fell ill last month, lying in bed and
not being able to move, that I spent time reading research about M.E on my phone. Before
that, I only really knew about Lupus and didn’t realise the severity of how M.E would affect
me, and more than that; I placed my trust in the professionals and therapists. But now I
know what M.E is, what research has been done into it and what can make M.E worse. I
know there are charities which are fighting for us, I know that there is now new biomedical
research being done in the UK at UCL, and that the PACE trial researchers recently were
ordered by a UK tribunal to release their trial data which they had so far refused to release. I
hope, that in 10 years time and with research that the medical profession can no longer
ignore, the medical guidelines will be changed and such sick people will not be actively
made worse by the very people who are supposed to help them. Any “therapy” that ignores
the serious physical causes and symptoms of M.E, is dangerous.
