About Me with ME

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My Blog

Just thought I would tell you a bit about myself and how I got to be what/how I am these days.

I led an uneventful life health-wise until I was about 26 that was when I had Gout, yes that is right 26 and Gout. This was not as bad as it sounds, I had some tablets and a slight change in diet and it has gone.

When I was 28 I was diagnosed with Cervical Spondylosis and that is still with me.

Way back in 1988 I had a really heavy cold/flu and it wiped me out for a couple of weeks, when that went or when I suppose I realised I no longer had the cold/flu and I was ill with something else I saw a doctor (at my wife’s insistence) and after many blood tests, a couple of weeks in hospital and being told I may have‘Green Parrots Disease’ or something with some exotic name among other things.

It was suggested by a visiting doctor that what was wrong with me was M. E.

Problem with that was, well, at the time was a bit uncommon apart from the derogative name of Yuppie Flu’ and it did have a terrible stigma to it (and it still has to some degree) and to be honest at the time I honestly thought I was going to die because I felt so ill, and the worst part was that I did not care if I did because I felt so bad. The only thing that I could manage to do was to walk the two Springer spaniels we had at the time. In the middle of winter although it is not to cold down the west country (we lived in Plymouth) most of the time, it can still get down to the zero temperatures and lower but I would take our dogs out in just a light tee-shirt and would return home saturated through with my sweat and that would knock me out for rest of the day and for the next day until it was ‘walkies time’.

But I was pretty lucky as I had a doctor who was understanding and tried to help me for over a year until I was well enough to go back to work.

So for a few years I had this M.E. on my back, and osteoarthritis that started in my neck and now in my body just waiting for me to slip up. Except for the pain all over at different times I felt OK I could manage it with the Tramadol and things.

Although I have had a Spinal decompression done twice and have Hepatitis B (which has absolutely no impact on my health) I still felt that I could manage it.

I had a bad bout of restless leg for a few years in the early 90’s which still sometimes pop up and say ‘Hi I am still here so don’t forget me”

And then I had pneumonia in June 2007. That has left me with all sorts of problems.

Because I was ill and unable to do my exercises in fact unable to exercise at all for three or four weeks my arthritis (that I have had for so long) and was coping with, has really taken off, and this has left me pretty badly disabled.

But I am still walking the dogs, all be it only a little way [as the pain is so bad] but I feel I really need to do this as I think if I stop I will be in a wheelchair sooner rather than later and I will fight that all the way.

I know it is creeping up on me as I went Christmas shopping on Saturday 1st Dec 2012 and here it is three days later and I am still trying to get over it, with the pain so bad.

Sorry to bore you but I thought a bit about me might get others to share.

Terry

[Tearsofaclown]

Hi Terry, I couldn't believe it, when I read your Story, as it is so similar to mine. My ME began after a cervical decompression & fusion, and which I never really recovered from. I too, can remember thinking I had the flu, but without the runny nose & cough. I felt such a nuisance to my doctors, when each test they did only showed signs of arthritis, but nothing else that would identify a particular cause for the amount of pain I had, nor the strange level of body temperature. I couldn't stand being in the sun, and the winters just felt very mild, when other people found them freezing. All effort to do anything would leave me so exhausted and in such terrible pain, that I did believe the illness was serious, or indeed terminal! I have some nerve damage, from the disc problem in my cervical spine, but I can't have any further surgery as I'm in such bad shape physically. Being told I needed to exercise did feel as though I was being asked to climb Everest. My efforts to move about would leave me unable to function at all, from absolute and total exhaustion. I'd fall asleep, without being aware of it, and could remain asleep for hours and hours. Often I'd sleep for a whole 24 hour period, without waking! At other times, I would be so alert & awake that I couldn't sleep at night, or during the day. None of it made any sense to me. The only test that revealed some significant problem, was the CRP blood test, and the kidney function tests. Both would be hugely raised, and my doctor was very concerned. I developed pneumonia, and required steroids for a long time. As a result, my weight 'blossomed', and this in turn caused me to slow down more, and be less able to walk or do anything. Always, two steps forward, but 3-4 backwards! I take Gabapentin, along with Tramadol, Diclofenac, Cetirizine for the allergies I've developed since the ME began. I take an antidepressant, which I find is an essential part of my daily routine for drugs. I do get depressed, when I can remember just how super-fit and active I used to be. Working 70 hours a week quite often, when needed. Driving was something I'd always taken for granted, and just used to jump into my car, and go. Now, I tend to wait for someone else to take me, because I'm too exhausted to hold the wheel or control the pedals. You are right, people don't understand and naturally assume it's a case of Laziness in the extreme! If only it were just Laziness, then it would be easy to turn my life around and start living again. I used to think I'd die, as I felt so ill. Sometimes, I'd wonder whether my doctors were keeping the true diagnosis from me, as they did seem disinterested in persuing any additional tests. I'm getting very tired now, but it was good to see that I'm not alone, with my symptoms. I wish you good health, soon. Tearsofaclown.

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I thought it was just me going through middle age early not feeling the cold whilst everyone round me at work is wrapped up. Did wonder if it was linked to having M.E but as my GP has got fed up of me going to her with every new symptom I was loathe to ask. I too have had to cut my driving down -used to drive long distances with no problem but now restricted to driving around town and only in daylight.

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Hi Tearsforaclown (can I call you Tear for short?)

When I went to pain management the thing that impressed on me the most was just how many people there were with pain related problems and when talking to them it was weidly refreshing to find I was not alone, there were others who had similar pain as me and some who new people with ME & Restless legs that I did actually relax and feel a bit 'not alone'.

What you said about the body temperature really hit the mark as before all this I could lay in the sun for hours and loved the heat and dreaded the winters, but now I am dead opposite, the winters seems definitely warmer than they used to be (even though the cold makes everything hurt more) and I am the first to get the air con going in the summer now.

With the tablets my doctor is giving the Tramadol, the Gabapentin etc. in the hope it helps and when you take these things I think you hope they work and it is that hope that you live on for so long you begin to believe they are working, but at the same time it is to scary to stop in case they are not working or worse that they are and the pain increases.

You mention the perception some people have of the laziness side of it and I always want to scream at people 'Do you think I want to live on benefit after having had a job earning over £30,000.00 plus a year and go to under £200 a week. I had my dream job and loved going to work in the morning and even though it was long hours sometimes I loved the job and it did not seem like work. now I write a little blog or a few lines on the computer and I am totalled mentally and physically.

People think that as I laugh and joke with them that I am getting better but the thing with me is when I am in real pain or feeling bad that is the time when my sick humour kicks in and I start to behave the dead opposite to how I feel. thankfully my wife knows me and has seen me in all my best and worst and sometimes she has to explain to people about me (best of luck on that one I say).

Anyway this is it for tonight. As Dave Allen used to say "May your God go with you"

Kindest regards to all

Terry