It was Christmas 2004 we had just finished our loft conversion. Our house was now over 3 storeys. We had not long been married and were looking forward to a long and happy future.
Life had other plans. Mark, my husband was an active being who loved being outdoors, working in the garden, working in the countryside, cycling. We played badminton together and spent lots of time with the children. Suddenly he became a bit clumsy strange as he was always so precise in everything he did. This got worse until he was unable to tie his shoelaces or even cut up his food. The doctor dismissed it, so another doctor's opinion was sought. A neurological referral was the next step but this all took time. We were very scared doing all the usual scared things, not talking about it, talking too much and imagining all sorts of things, terrible things. We both are Radiographers I work in Breast Screening, Mark a lecturer in Radiotherapy we had a little knowledge which can be such a bad thing. Mark's expertise was in cancer and tumours so he immediately picked out the worst tumour and convinced himself that was it. I wondered about MS but my experience was limited to the women that came for Breast Screening and those women all seemed to be severely disabled ( if they had MS that didn't require then to be wheelchair bound them there was no need for me to know)
Eventually the Neurological referral came through and off we went. The hospital a very familiar environment for both of us took on a new persona we were "patients" After the initial appointment it was very obvious to me that the Consultant suspected MS. Obvious to me but not to Mark he had completely missed the hints that were given, the drip feed scenario that I had heard so many times when a consultant prepares his patient for bad news. I wanted to scream and shout and tell Mark "it's MS" but I couldn't ! I was not the health professional I was the wife, the support, the carer. The barrage of tests were next more hospital visits sitting in waiting rooms all pretending to be friendly places but on every wall posters, leaflets displayed all mocking me. MS and fatigue, MS and children, getting around with MS, MS and sexual function, adverts for wheelchairs, mobility scooters and on and on and on...
Eventually the tests were done and the diagnosis confirmed. Now it was just a matter of living with it. Mark is a very intelligent person he has an MSc and teaches Radiography students to degree level and beyond so why did he read a book that was over 20 years old and described all MS sufferers as ending up bedridden and dying a grizzly death. I cam home to find him curled up in a corner, terrified. That night we slept with the light on. The first year was tough, well every year is tough. The children suffered my daughter ran away, went to live with her father and our son who started playing up and developed severe behaviour problems at school. We didn't handle it well. We pretended all was ok.
It is only now 4 years on that I can reflect back. I can see where we made mistakes and what we could have handled better. We have changed I make the decisions now but try to include Mark, he can't make decisions. We try to lead a healthy life our diet has improved and we are more conscious of our own mortality. I have gone headlong into a fitness regime as now I frequently run up and down 2 flights of stairs whenever Mark forgets something. My diet is all geared to gaining energy.
We are managing now supporting each other when the need arises and listening and talking to each other. Communication is vital. Patience is an attribute that every care has to have a skill I have learnt I still get angry and fustrated but by writing it down like this I can get it out of my system and if you are reading this maybe you should try it too.
No comments:
Post a Comment