ME/CFS "But you are so tall" (ME/Chronic Fatigue Syndrome)

Member Name: annieboo

Product:	ME/Chronic Fatigue Syndrome
Date:	30/03/09 (196 review reads)
Rating:

Advantages: None

Disadvantages: Everything you can think of-and more!

ME/CFS touched my life some nine years ago. I am writing this review as the wife of a ME/CFS patient. Firstly why the dual title? Well as with most things connected with this awful condition there seems to be a debate regarding what to even call it although CFS is now the accepted name for the condition.

This condition really divides opinion-so many people think its a skivers charter and that it has replaced the "bad back" as a way of avoiding work. WRONG WRONG WRONG. Some of the comments that "friends"(and some family, sadly) have made include "well I get tired but I don't go running off to the doctors;" "Its all in the mind you know;" "Well he doesn't look ill to me;" "I'd like to see you if you had(insert specific condition) like i have:" Or the quite stunning "but hes so tall!" I am still trying to work that one out!

In January 2000 my (tall!) husband came home from school(he is an English teacher) and said that he didn't feel very well and that he had a really bad headache and he went to bed. Without boring anyone with the ins and outs of the next 30 hours(awful) I found myself watching my husband being admitted to hospital with meningitis. He looked so helpless with various tubes and a drip in. He was very poorly and they were very concerned about his condition.

Eventually he was discharged but had to undergo various tests including a CAT scan and enough blood tests to keep a vampire happy for a month!
Even though he was gradually improving from the meningitis things were far from ok. He was weak and felt washed out. However we weren't unduly concerned as we just thought it went with the overall recovery and was to be expected.

My husband mentioned this to his consultant at a follow up appointment. It was this doctor who first mentioned the possibility of ME(as it was known then) however that's all that happened he did say to have a word with the GP if things didn't improve within a month or so.

Well things didn't get any better if anything they got worse. He did go to his GP who was unsympathetic to say the least. She made it crystal clear that she did not believe that ME existed. He was prescribed anti depressants and advised to get back to "normality" as soon as possible(this was just about the worse advice he could have been given)

He did go back to work although he was really having a really hard time. During he started to see another GP within the same health centre. This time the doctor was much more willing to listen my husband and didn't treat him as a malingerer looking for any excuse to avoid work. This alone was a terrific help.

He had convinced himself that he was weak and had to do better. At this time he had applied for(and got)a new teaching post. As with all teaching jobs he underwent a medical. He was totally open with the Occupational Health doctor(due to the previous illness it was a full and comprehensive medical) It was felt that he was employable although the Dr did have some concerns about his overall health and felt that he had returned to teaching far too quickly. However(thank God) he felt that even if it was ME the head teacher(who had had first hand expierence of ME), the occupational health department in general and more importantly himself(who had written a paper on ME) would all be able to support and assist my husband.

So he started at the new school in the September. He had almost nothing during the summer holidays other than rest. The school was great, with terrific children and he loved everything about the school. However he was so poorly that I started to think he had something terminal.
He had no energy, had loads of aches and pains, skin problems, could sleep on a washing line, was depressed, frustrated,weak and had no energy at all. He had loads of bugs at this time as well. All of this in someone who previously had never been ill(prior to the meningitis had only had had six days sick in his entire working life)

He got the flu and was really poorly and it became obvious that he couldn't carry on as he was. The school was very supportive and he got loads of support, however things just went from bad to worse. He would drag himself into work when he really should have been off. He would sometimes have to sit in the car outside our house for fifteen minutes before coming into the house as he didn't have the energy to get out of the car and walk down the path.(We only have a small path) He used to get into school by 7am so that he could rest before the start of the school day. Always blaming himself for his "weakness, his "lack of guts" and his "uselessness".

The fantastic head of occupational health managed to refer him to a specialist ME clinic for an initial assessment. When he was eventually seen(after a battery of yet more tests to rule anything "nasty" out) and the verdict was that he did indeed have ME. There was no doubt of this. In many ways this was a relief as putting a name to the symptoms helped me if not him! He was still blaming himself and unwilling to accept that he did have a medical problem.

He was then accepted on to the ME/CFS(this was the point at which I was aware it had changed name)treatment programme at the Royal Liverpool Hospital (despite us living a LONG way from Liverpool). He commenced it eighteen months after the initial appointment. This is entirely due to the demand on such programmes and the need for them.

The programme demands total commitment with a set programme of gradually increasing exercise on a daily basis increasing each day. Additionally, there are meetings for both the patient and their partners/parents and a programme of cognitive behaviour therapy. Each intake has twelve patients and lasts for eighteen months(the meetings tail off after the initial six months).
The range of patients varied wildly. The oldest in "our" group was 61,the youngest 15, everyone had different symptoms.and the range of severity of the problems encountered just proved that CFS is a vile and cruel condition.By the way, we had been told not to refer to CFS as ME anymore.
However there was one very interesting thing we learnt about the condition. Whilst there are loads of illnesses that can act as a trigger for the condition there are specific personality types that are prone to this illness. Driven, high achieving individuals are far more likely to be affected. Additionally, people who either have unrealistic ideas about their workload in any field; people who "drive"themselves(quite a high proportion of sports people are affected)people who feel the need to prove themselves either to themselves or others. All these are typical. Often the condition is made worse by the need to "not give in" I feel that it is not helped by some of the guff written about the condition by some newspapers in particular.

When things became really bad(after the initial consultation but before the programme) we decided that my husband was unable to carry on teaching. The random nature of the condition means you don't know when you will have a good or bad day. This was heartbreaking as the school had been wonderful to the extent of offering him various options ranging from full time teaching(as he was doing) to .5-one half day and everything in between to a leave of absence. He would have loved to stay there but had to admit that he couldn't continue. So he left to concentrate on getting better.

During that time we managed financially by living on our savings. We had a house that was mine before we got married. It had been rented out and had been stood empty. We had it on the market with little joy and then had our first big stroke of luck as we had an offer on it(snatched their house off!).This combined with my (flexible thank goodness)work meant we managed without claiming a penny from anyone.

It has been a rocky road, he developed various problems and I have seen the inside of more hospitals than I would ever want to. He had a serious eye condition and various oher nasties that seemed never ending.
However, now he is back teaching and has been for a few years. He went back firstly as a mentor then did supply before taking the plunge back into full time teaching. He still has to be careful. His immune system will never be great, he has to have the flu injection each year and he takes ecchinacia on a regular basis.
And as for me? Well I know so much more about human nature now. I no longer speak to my half sister and feel that I am a much more tolerant person. However, I am also rather cynical and a little bit pessimistic now-if I see a bright light at the end of a tunnel you can bet your life its a bl00dy big train comming for me!!
CFS/ME does exist and its a life sapping and nasty condition I wouldn't wish on my worst enemy.

Summary: Bad illness made worse by "know it alls"