Frustration of "normal" results
I remember the appointment in which I was first diagnosed with ME/CFS- the doctor started by saying 'according to your test results you are a very healthy young lady', I remember my heart dropping, thinking I was being disbelieved and I wasn't going to get any answers, but then I received a diagnosis of CFS (it's not currently possible to test 'for CFS', it's a diagnosis of exclusion so everything they test for comes back normal by definition) and remember actually feeling relieved. I didn't know then what it would mean for me, I was just pleased to finally have an answer (of sorts), it felt good to finally have an explanation for why I had been feeling unwell for so many months.
I've had lots of tests come back normal over the years- some I've desperately wanted to come back normal, some I've expected to come back normal, some have been unexpectedly normal and on occasions hearing 'normal' has been frustrating and disappointing.
I have recently had my ultrasounds (abdomen and Doppler ultrasound of liver and portal system) and to my absolute dismay they were normal. I just cannot believe with the severity of my abdominal pain and nausea, my inability to tolerate supplements/some foods, and the amount of weight I have lost, that neither my gastroscopy nor my ultrasounds have shown anything wrong. I just want someone to be able to tell me what's wrong and what they're going to do about it. I really do feel that my weight and nutrition are part of why I'm not improving/am continuing to deteriorate at the moment, so I'm desperate for someone to be able to help!
It's so annoying to hear 'normal' when for once you just want them to find something fixable. I remember when I was found to be iron deficient and severely vitamin D deficient at one point- I was so hopeful treatment would lead to an improvement, sadly it didn't, but it's strange to actually want specific problems to be found, but it's because I want to be fixed, I'm desperate to get better. I've been tested for lots of conditions over the years, as my symptoms have accumulated and morphed; some potential diagnoses have seemed to fit my symptoms really well and I've thought everything was going to fall into place and things were going to be fixable.. Sadly it's never worked out.
It's very difficult to be so broken whilst also currently unfixable. 'Normal' is not always nice.
Well, where do I start...
Last time I did an update I had just had my gastroscopy and was in the process of taking time out from Uni.
I came down with a bad cold/infection soon after my gastroscopy, so got back to my parents home having left Uni and barely left my bed for a week; I felt incredibly unwell. I was meant to be returning to my Uni-home for a few days the following week for a psych appointment and my ultrasounds but wasn't well enough to travel in time for my psych appointment so I asked her to ring me and I updated her on what had happened. I did manage to get to my ultrasounds thankfully.
It made me wonder how ME/CFS sufferers are meant to know whether they have a cold or the flu when I have every symptom of the flu apart from sneezing on a daily basis...?! I'm fairly sure it was just a cold/sinus and throat infection on this occasion, but it did make me wonder.
I have also been in contact with my dietitian. I am simply unable to tolerate any supplements, so am having to attempt to put on weight through food alone. At the moment it's going ok, but I'm not really making much progress. I have to weigh myself weekly and ring my dietitian in 4 weeks time, or earlier if my weight drops at all. I'm not really sure how I'm going to get back to a healthy weight without any supplements to help, but we'll see.. Hopefully things will pick up and I'll start to see some real sustained progress.
The cold has caused a further deterioration in my condition. I'm now spending a lot of days in bed with evenings downstairs on the sofa. I'm requiring a lot of help from my mum who brings me food and drinks regularly. I can no longer shower because of dizziness/problems being upright. Bathing is difficult, exhausting and exacerbates symptoms, but is at least lying down and I can take as long as necessary. Life has got really quite challenging. But I've had a couple of meals out in recent weeks and have had a couple of days where I have spent time with friends.
I 'managed' a trip down to stay with my grandparents and brother (with my mum), which has been nice so far. I say 'managed' because I ended up awake in agony basically all night (<1.5 hours sleep) the night after the journey because of massive overexertion (being sat up on my scooter, without the backrest, for hours and I had a bath before travelling). But it's been nice to see family and have a change of scene, and a friend came to see me yesterday which was really lovely. I have had a day in bed today, partly because I'd had the evening of travel, night awake and then the day with my friend so was in a bad way and in need of rest, but also to rest ready for tomorrow (well technically today..) because I'm going to a spa for a facial and to sit in the hot tub/lie on the loungers which will be nice. I probably won't be able to swim much but I'm sure it'll still be a nice day. I feel in need of some pampering. I've had a bath tonight ready to go out tomorrow but am now lying awake in pain as a result. You just can't win with this illness.
My temperature control is now completely broken which is proving difficult. At home I have a fan by my bed for when I overheat but I don't here. I'm constantly changing from summer pyjamas to fleecy winter ones because one minute I am burning up lying uncovered, the next minute I am freezing cold despite being wrapped in a duvet.. it's all very peculiar.
I'm still waiting to hear about my falls/faints referral and haven't heard back about my PIP claim at all yet (I checked and they have received my form). Things are looking quieter at the moment appointment-wise over the next few weeks which is nice, apart from it means I don't get to see my Uni friends which is a shame.
I can't think of anything else at the moment so take care everyone and I will update again fairly soon!