Wednesday 16 January 2013

Keeping you updated

This is the first (proper) blog I've done, so apologies if it's not brilliant. I will probably end up doing a lot of editing to ensure I'm not rambling too much!

Basically, I've had a pretty much 'mystery' illness since 2010 and, since my last doctor's appointment (earlier today) decided I will keep track of how my symptoms progress/decline, what sorts of treatment and tests are conducted and generally what my doctor says. I'd like to have had a proper diagnosis in the near future because it has affected my life so much. I would definitely welcome some advice also. The reasons for this blog are to get everything written down (it may help), get any kind of advice I can from people suffering similar symptoms and to actually notice when/if I do improve healthwise.

I'll start with my symptoms:
  • Fatigue (can be really bad)
  • Dizziness
  • Achy joints/bones (can also be really bad, especially in back and legs)
  • Weakness
  • Some nerve pain
  • Nausea when very fatigued
  • Slightly blurry vision when very fatigued
  • Difficulty concentrating
  • Clumsiness
  • Mind Fog (not fun when going to interviews!)
  • Some sleep problems
  • Overactive bladder (a lovely embarrassing one which puts me off using public transport)
  • Can be sensitive to bright lights/loud noises.
  • Hair loss. I put this down just in case it is relevant but I dye my hair regularly so that could be the reason. Luckily the patches are not noticeable (apart from the one that grew back recently).
I think that's the lot! There's a nice list for you haha. 

So I first started noticing I was feeling pretty ill the morning of a lecture halfway through 2nd year of University (2009). I stayed for the rest of the lecture, although I felt pretty rough, and just rested when I got home. This general 'unwell' feeling persisted though, and I found I was missing more and more lectures. At the time the nausea was the most noticeable symptom, with pains and fatigue coming a close second. I also had stomach-aches. 

I gave it a couple of months before I made an appointment to see the doctor. This was probably advised by a friend, I don't remember. I'm the kind of person who won't see a doctor unless I feel REALLY ill. The doctors I was registered at dealt with a lot of students with sports injuries and general alcohol related things. I went to a uni in a city where students outnumbered the locals, and it was clear that the locals weren't happy about this! This was probably why I had a pretty cold reception when I arrived for my appointment. It definitely seemed like the place wanted to get rid of me as soon as possible. The doctor listened to my complaints and suggested it was probably glandular fever. I don't remember him inviting me back for a follow up, getting me to go for any tests or take any medicine. He just, sort of, sent me away? Well I knew no better so I took his word for it and waited to get better.

By my next doctor's visit, exams were looming and I was getting very worried about how I would feel in a room full of hundreds of students. I probably started getting some anxiety symptoms then. I suppose it's only natural though. I mentioned this to the doctor and he agreed to write me out a sick note so that I could take the late take exams, in the hopes of having a smaller room of students, therefore less stress. 

After the first lot of exams I noticed the rest of the symptoms starting to creep up and by now I was missing most of my lectures. I went to the doctors yet again (a different doc this time) and it was suggested that my thyroid could be playing up. I had another blood test and when I came back for results/another appointment, it turned out that my TSH was high. So they had finally  found something! Unfortunately, I was told that because my T4 was normal, I wasn't considered 'ill enough' to be treated. I think I got a bit fed up with getting nowhere and ended up bursting into tears, to which the doctor said I might be depressed! Now I would have no problem saying if I had depression but I'd been studying the condition as part of my course and I was in no way depressed, just fed up. I don't think bursting into tears in a doctors office would be grounds for diagnosing a mental health condition exactly... After a few more appointments there, and blood test results fluctuating from high to normal TSH, I had a suggestion of m.e/chronic fatigue syndrome and was sent home with some paperwork to read through. 

I gave up with doctors for a few months after that. I probably shouldn't have but I felt that there just wouldn't be anything done and that maybe it was something I could manage myself. Of course I was wrong and the symptoms persisted. I found that my grades were suffering and this was driving me mad as I had been so proud to get onto the course in the first place. (I did BSc Psychology with Clinical and Health Psychology).

I registered with a doctors nearer my house after a while and found the atmosphere a lot more welcoming. The place was very small and consisted of one or two doctors and a small group of nurses. I saw a female doctor there; who I believe was the senior practitioner. She asked me more about my diet and seemed to have more time for me this time. I don't think I mentioned the previous suggestion of m.e/cfs. I didn't want it to be that to be honest because I found that there were no cures, only ways of 'managing' the condition. At the time I was looking for a quick diagnosis and a sure treatment. Wishful thinking I guess. Anyway, I digress. This female doctor suggested IBS to me, as I had said that my diet probably wasn't great due to my love of super noodles, frozen food and caffeine. I was prescribed these peppermint oil tablets and anti sickness tablets. I gave these a good go and found the tablets actually worsened my stomachache and didn't take away the nausea, so I stopped.

3rd year was really the worst for me symptom-wise. I barely left the house, fell out with a friend (because I would never go out) and felt too ill to go to any of my lectures. My moods were definitely going downhill fast and that was when I started getting noticeable bladder trouble. I didn't like being in situations where I wasn't near a toilet so I avoided them as much as possible. I contacted my personal tutor to let him know and I visited my doctor again. After asking a lot of advice, I was allowed to complete my exams in the sick bay. I was also asked if I would like to apply for extenuating circumstances but I didn't want to 'make excuses' for my lower grades. I made sure I studied as much as possible at home, however, and achieved a final grade of 2:2. I originally aimed for a 2:1 but considering how ill I felt, this was a good grade and I was happy to reach one of my goals of getting a Psychology degree.

When I arrived back in my home town, I decided to continue seeing the doctors because I wanted to have had a diagnosis and treatment by the time I started a full time job. I had done some part time work during my time at university and had taken so many sick days I had to quit before I was fired. One of the downsides of no diagnosis: you're not protected from being fired for being ill. Individual symptoms just aren't taken seriously.

I had more blood tests with my TSH levels fluctuating yet again and, after discussing M.E/CFS with one particular doctor, I was prescribed a low dose of Citalopram (around 10mg I think?). I kept to this dosage for about a month to no avail so I went back and was prescribed the higher dose (20mg). I couldn't believe how much it affected me! I felt completely spaced out, everything seemed to move in slow motion and I couldn't concentrate on a thing! I tried this for about a week (I was told to give it a go for 4 before I'd notice improvement) then stopped. The last thing I wanted was to feel worse and I dread to think how I'd have been if I'd been taking these pills for 4 weeks! I had more blood tests, which flagged up low folate and vitamin b12 so I was prescribed about 3 months of pills for these. By this time I was in work and struggling through. I did have to take the odd sick day though, some employers understood, some didn't. I completed various agency work and believe that my sick day frequency was probably one of the reasons why they didn't want me to stay on permanently. After finishing my dosage I had another blood test which came back normal. Surprise surprise, my symptoms continued though.

By now I had moved in with my partner and had registered with a different doctor. Notes took a while to transfer over so the doctor could only really go on what I told him. I would write down my symptoms in case I got confused during the consultation, because I wouldn't want to miss anything vital out. My latest doctor was the senior practitioner at my new surgery and was a big fan of recent research studies (quite a positive thing really). I mentioned the suggestion of m.e/cfs again and he sent me off with information about a low Salicylates diet he wanted me to stick to for a couple of weeks. He also sent me off for a very in depth blood tests to see if I had any bone problems, kidney problems, deficiencies or even Celiac disease. This came back as positive for vitamin d deficiency so I was prescribed Colecalciferol this time. I also mentioned that the diet wasn't working and made me feel very malnourished.

Well since then I've been taking the vitamin d tablets as prescribed and most recently, I saw my doctor to bug him again for advice and mention my bladder problems (I hadn't mentioned this up until now; thinking I could manage it, but not realising how much it was affecting quality of life and independence). He mentioned possible gluten intolerance, put me on a gluten free diet to try and has given me a bladder diary to fill in and talk him through at a telephone consultation in a week or so's time.

I do hope this post hasn't been too rambly! I've tried to add as much detail as possible without getting too boring. On my next post I will be going through what I eat on this diet, how I feel because of it, and probably some recipes I find/create. I might even add some pictures for fun.

1 comment:

  1. Good to see this blog. I'll be following it with a keen interest