Sunday 27 January 2013


Hi everyone.

Apologies for me completely abandoning my blog for a while. I am not very disciplined when it comes to doing things on a regular basis haha. I thought I'd better add more detail (may end up being rants however!) about different aspects of my illness 'journey' so to speak.

I'm not sure what to think of my newest doctor. I've technically had him for at least 6 months now, although I do not see him very often as he prefers telephone consultations (and I can be a bit shy with phoning sometimes. I don't like not being able to see a person's reaction to what I say and the more I think about it, the less I can concentrate on what I'm saying; which doesn't help the mind fog much).

When I first went to see him, I pretty much had the diagnosis of M.E/CFS. Well, most of the doctors I'd seen had said that's probably what I have. They'd given me paperwork but no follow ups after my fluctuating blood test results. As soon as the results are normal (or not too abnormal) it's like they think I'm fine so don't need further tests/treatment/consultation etc. I had written down all my symptoms with annotations to say which were the worst, which were most often and so on. This doctor didn't seem to like the fact I'd written it all down and even scoffed at the M.E/CFS suggestion. He said that doctors didn't like the term M.E, preferred to call it CFS and he believed that the diagnosis was just an excuse doctors made when they couldn't find anything else! He's tried me on some diets, tested me for Lupus and so far this gluten free diet is doing naff all. I feel more tired, more achy and weaker. I really don't think it's gluten intolerance. What should I do?

I just don't know what to think about him to be honest. He's the senior practitioner at my surgery so should be very clued up on illnesses (including invisible illnesses) right? I don't like his attitude towards the condition though, and I don't like that he prefers to use the term Chronic Fatigue Syndrome. It plays down the illness so so much. It makes it sound as if the sufferer is absolutely fine apart from this fatigue they get quite often. The term completely ignores the vast amount of other symptoms that make the illness so damn debilitating (chronic pain, weakness, dizziness in some cases, mind fog amongst many others). I probably should've asked the doctor why he prefers this term (I'm saying 'term too much) over the much more scientific and, let's say, legitimate name Myalgic Encephalomyelitis. At least that name gives more of an idea of the symptoms.

It could turn out that I have something completely different to m.e. but after seeing so many doctors and having the majority of them saying m.e., this is all I can go on. It'd just be nice to at least have some consistency. I'm having such a hard time looking for work at the moment, trying to impress potential employers and convince them that, despite everything, I AM reliable and able to learn things quickly. Whenever it gets to the part of the application form that asks about disabilities/health conditions I never know what to put and end up saying I have nothing, in the hopes that my symptoms will not get in the way of the job I would have to do. For one, I don't 'technically' have a diagnosis. In that, it hasn't been written in my notes (thanks doc...). For another, despite the disability discrimination act, from my experiences, employers do treat you differently when you need sick days/do things slower because everything hurts so much/can't make some meetings because you feel too ill and being in a room you can't leave (without being rude) exacerbates symptoms.

I actually feel as if my symptoms are getting worse at the moment and I get some awful mood swings as well. This is a stressful time in my life though. I have been unemployed for 4 months now and live with my partner, who works full time. He brings in practically minimum wage (give 2 or 3p). Because he works full time I'm unable to qualify for ANY financial support whatsoever. So technically I have no income. Not even a discount from anything because I don't qualify for jobseekers. I want to do more to look for jobs but I don't feel well enough to go door to door so all I can do is give out CVs in town, apply via post and apply online. Apart from help from my partner and my family, with paying bills, I live off the money I earn from paid surveys. This is hardly a thing but it helps when I need a few pounds extra to pay pet insurance and phone bill. I really shouldn't have taken on a 2 year phone contract but at the time I had a job and most things seemed fairly optimistic. I hate the stigma that is attached to benefit claimants. The general consensus seems to be that they're all scroungers that the tabloids are waiting to catch out. In the majority of cases, they aren't though. They are people in really awful situations who need this extra help to survive. They should not be blamed for the odd time that they can go for a nice meal out or even a cheap holiday (if finances even stretch that far!), why should they have to stay at home staring at 4 walls all day, getting more and more stressed, depressed and ill as a result?

I really am rambling now, and ranting (well I did warn you!). I do feel guilty for ranting because I know of people who are literally bedbound because of illnesses such as m.e. I am so thankful I am not that bad. Practically housebound (unless someone is with me) is my situation for now. I can't remember the last time I walked out the house and got on a bus into town on my own, and I really can't remember the last time I managed it without being absolutely bursting for the loo! This stupid overactive bladder has made me fear taking a bus now. On a good day I can take a taxi but I will still have to go to the toilet just before it arrives. At least in a taxi, I can make the man wait whilst I pop to a nearby toilet if it's really urgent. If I'm on a bus I just have to hold it and hope I don't look too crazy and fidgety.

I think I'll leave this post as it is for now as I'm getting a bit worked up mentally. I can barely concentrate on reading back what I've written so I do apologise if this is a little jumbled. If anyone has any advice at all as to what I can say to the doctor next, whether I should change doctors, should I look up a different illness even? I would appreciate it so much. Mind you, I really appreciate anyone taking the time to read this at all! I do want to say a massive thankyou to those that have taken the time though.

Thursday 17 January 2013

Week 1

Hi there!

So, after looking through the amount of food in my house that has gluten in, this gluten free diet is sounding pretty daunting/depressing.... However, I will stick to it as strictly as I can and persevere. I might even lose a couple of pounds in the process so win, win, sort of.

My symptoms are the same so far but I notice I'm getting some really bad stomach pains. This could just be something else though but it's worth recording it anyway. I will publish then edit this as I go along so that my blogging stays fairly regular. Please excuse the 'not-so-professional' way I've added the photos, I'm still getting the hang of this thing so bear with me!

Wednesday 16/01/2013

Drinks: 2 cups of tea (milk and 1 sugar), 2 glasses of orange juice, 1 glass of coke, 1 cup of hot choc and a glass of water

Brunch: 1 bowl of baked beans (about half a tin). I couldn't have them on toast because there's gluten in the bread we have and the cereal in the house had gluten in :(

Snack: Half a bag of minstrels

Tea: Beef stew with mixed veg.

Supper: 3 small toasted pancakes with butter (naughty, I know but I was starving!)

Thursday 17/01/2013

Drinks: 2 cups of tea (milk and one sugar), 1 glass of orange juice, 1 glass of coke and 1 chocolate milkshake

Breakfast: 1 bowl of baked beans with grated red leicester cheese.

Lunch: 1 bowl of beef stew with mixed veg

Tea: McDonalds cheeseburger, chicken nuggets and fries (no food in house)

Friday 18/01/2013

Drinks: 1 glass of water, 2 cups of tea, 1 glass of orange juice, 1 cup of hot chocolate, 1 glass of coke and 1 glass of orange squash

Breakfast: Nothing. I woke up late and there were no gluten free breakfast things in the house.

Lunch: Chicken dippers. After checking the ingredients it turned out they used a different flour so no gluten!

Tea: Piri piri chicken and rice

Supper: 2 pieces of fried chicken. There was no gluten free things left and I was starving! At least I'm cutting down...

Saturday 19/01/2013

Today is a bad day. My moods are all over the place and getting around hurts because I'm so achy and dizzy.

Drinks: 1 cup of tea, 1 glass of orange juice, 2 glasses of coke.

Breakfast: Again, no breakfast-y items and I woke up late.

Lunch: 1 bowl of chicken soup

Tea: Roast chicken with stuffing, green beans and gravy

Ok, so I'm going to have to just keep to cutting down on gluten (rather than giving it up entirely) until my partner and I can get to the shops. It is very snowy here and so cold I can't stand being out for more than a few minutes. I will keep you posted!

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.