I thought I'd start the new year off with a new blog where I can write down my journey with M.E and other maladies as it it says in the blog title.
A little about me first.
The illnesses I have are, M.E, Fibromyalgia, Cervical spondylosis, Grade 4 Chondromalacia and Asthma.
My first real memory of pain is from being a young child and having awful pains in my shins, I remember my mum telling me they were growing pains! Well if so, I'm still growing at 42! I learnt as I got older that those pains were there when it was cold or wet, which living in the north of England is quite a lot!
The next pain I remember is having a really painful and stiff neck. My mum took me to the doctors as she thought she could feel a lump. I was referred to a specialist who had a good look at my spine and, from what little I can remember, he said that one of my vertebrae was more pronounced than others and that I should take care of my neck and take pain killers when it was bad. Well, that pain never really went away I just learnt to live with it as you do. Until in 1993 I started with a pain in my shoulder that got so severe I once again went to the doctors and was given pain relief and sent away after being told it was a pulled muscle in my shoulder.
I suffered for a few more months and had to return to the doctor as the pain was so bad it was making my life a misery. Going to work (on a high speed production line) was becoming unbearable. The pain was constant to the extent that it regularly had me in tears. I was also suffering very bad headaches that would start in the base of my skull and work their way up to the top of my forehead. There was also the pins and needles sensation in my arm and hand and sometimes my arm would go numb or just stop working so I was dropping things.
This time the doctor said there was very clearly something wrong and was very angry the other doctor hadn't picked it up. So, I was once again referred to a specialist who this time diagnosed me with Cervical spondylosis. He didn't tell me much about it as he seemed to think I was told about this when I was younger. Which I obviously wasn't! Anyway, once again I was told to take pills for the pain, and to take some time off of work to give my neck a rest.
A few months later I was involved in a minor accident at work (I really can't remember what happened, as hard as I try) and I ended up in the casualty dept. at Jimmy's in agonising pain in my shoulder, it was like someone was sticking a red hot poker in my shoulder and violently jerking it around. The pain was really excruciating, it was so bad I was in tears. The doctor in casualty asked me about the history of my problem and I told him what little I knew and that I was told to take pain killers when it was bad. He asked me which specialist I was under and when I told him he kind of shook his head and said he would be back in a moment. I was in the last cubicle so saw him go to phone and heard him ask for my specialist, of course I don't know exactly what was said, but the casualty doctor was very very angry and shouting at my specialist. When he came back he sat with me for a while and explained exactly what Cervical spondylosis was and that I should have been given a neck collar to wear. He also arranged for me to have a course of physio therapy to try to relieve some of the pain. I went for the physio for quite a while where they would put me under a heat lamp and attach two machines to me, one of which was a TENS machine, the other I can't remember. It did seem to help a bit but as soon as the course was finished it was as bad as ever. My doctor arranged for me to buy a TENS machine to help with the pain. TENS machines weren't easily available back then like they are now, so it took a while to get hold of one and cost me about £150. And now you can get them for as little as £15-20!
Over the years I have had lots of courses of physio, which do help a little bit at the time, but as soon as the course is over I'm back to being in constant pain.
I think the next thing to go wrong with me was my knee. From what I remember (M.E. brain) I had been in meeting so had been sat down for a while and when I stood up my right knee gave way sending me into a heap on the floor! The pain was excruciating and it took a while for me to get back up! This happened quite a few times over the following weeks and I was getting a lot of pain in my knee. So, off to the doctors again. The doctor said straight away that it was a problem with my cartilidge and arranged for me to see a specialist. This appointment came through pretty quick and before I knew it I was booked in for an operation called an Arthoroscopy. I had the operation and thought that would be the end of my knee trouble. How wrong was I. When the surgeon came to see me he told me that I had no cartilidge left in my knee and the pain I was getting was caused by my Patella rubbing on my Tibia. He suggested that I have a metal brace attached to my leg to hold the bones apart as I was too young for a knee replacement. I turned this down very quickly saying I would cope with the pain. The surgeon said he would give me 5 years before I would be in a wheelchair and in need of a knee replacement. I was told I should walk with sticks to take some of the pressure off of my Tibia. I think this was around 1995/6 and I'm still hobbling around on my own knee!
Next on my list came along the Fibromyalgia. I had been to my GP several times suffering with pain in my muscles and had really tender points on my body that I couldn't stand to be touched. After doing a few tests and poking and prodding me he diagnosed me with Fibromyalgia and prescribed some strong painkillers for me to take.
Next to come along was my M.E. I had been on holiday to South Africa and came back exhausted. I couldn't explain the tiredness and lethargy I was feeling so off I toddled to my GP again! My GP was also a little confuddled and sent me for some blood tests, he had a feeling I could have picked up some tropical illness while abroad as it had been six weeks since coming home and I should have been over a"normal" infection. The blood tests showed nothing like that, but they did show I had had Glandular Fever at some point. Thinking back I had had what I thought was Flu the previous Christmas and had worked through it thinking I could rest over the holidays. And thinking back, I had never really "bounced back". So I was put on a waiting list to be referred to a M.E specialist. The appointment was going to be 2 years away as there are very few specialists in our area. So, having private health care through work I decided to use it and saw a specialist pretty quickly. He did some tests and asked lots of questions and agreed with my GP that I did have M.E. That was in 2000
I wasn't given much information on the illness so just plodded on through life like you do. I carried on as normal as possible, but not being able to do much on "bad days" so catching up on "good days". After a while of suffering like this I decided to do some research on M.E and found out lots of things I hadn't been told, and of course I was doing all the wrong things so found myself in a continuous "boom and bust cycle".
In 2005 I had a very very bad relapse and was very ill for a long time. I had to take 10 months off of work because of it. Whilst I was off of work I found a local M.E group and got my GP to refer me which he did and I attended a 12 week course. The course was quite good as it told me lots about M.E which I didn't know. And I could share with the group the things I had learnt about M.E. A few of us have remained friends and share our M.E experiences through email.
I eventually went back to work on staggered return, doing a few hours a few days a week to start with.
I need to add at this point that throughout all my illnessess over the years the company I worked for, and the bosses I had were extremely understanding and helpfull, doing all they could to help me to continue to work. Until, that was I got a new boss just before my M.E relapse! When I returned to work she made my life hell! She refused to let me have my own job back, putting me on another, more arduous job. I fought it like mad and eventually managed to get my own job back but she continued to make my life a misery, treating me like scum and making me do lots of heavy work I had previously been exempt from. I had to get the union involved in the end as the bullying was taking it's toll on me. My self worth was at an all time low, and I was constantly in tears. She did her best to make it out that I was making things up, when in fact it was her that was doing it. She tried to take me through the disciplinary process accusing me of bullying and threatening behaviour! Well, to cut a very very long story short she was found out to be the one in the wrong. The union wanted me to take her to a tribunal but the whole process had made me very ill again and I couldn't go through with it. I was offered a job in another department (a job with a better pay grade and better prospects) by a person who had helped me through some of the turmoil, but wasn't in any state to learn a new job so had to turn it down. The union fought for me and managed to get me a decent payout on the grounds of disability discrimination and vicitmisation. So I left the job after working for the company for 24 years!
I'd say it took me maybe 1 and a half to 2 years to get over what happened to me at work, but I eventually did. And as for the nasty boss, she got her comeupance as she tried a similar thing with someone else and was asked to leave the company!!!!
Whilst I was off of work with the M.E relapse I discovered card making and that has been a godsend to me. It has kept me sane and my mind active over these last few years. I now have my very own craft room (thanks to my wonderful hubby) that I spend most of my time in. I'm very lucky to have a wonderful supportive husband who looks after me. We are also lucky enough to own our very own aparment in Egypt that we go to as often as possible. The heat helps me so much, and when we are there some of my illnesses fade into the background. One day maybe we can move to somewhere warm.
My crafting has also helped me to make some wonderful friends from a forum who I hope will be life long friends. I've been lucky enough to meet some of them in person and they are fabulous. As are the ones I haven't met of course. They have all been there for me through some very dark moments and are truly amazing people, and the best friends you could ever wish to have.
Well, I think that's quite enough rambling for now. It has taken me over a week to write all of this!
I'll be back as often as possible with diary like entries to let you know how I am and if I find out any interesting or useful information on M.E or any of my other maladies.
Thanks for reading
Lots of love
Anj
xx
