Ians CCSVI and MS Liberation

Today Ian cannot work, finds it difficult to process information, has serious eyesight problems which means he cannot read very easily, doesn't recognise people, struggles to read a computer screen, he doesn't hear very clearly, he can’t drive, can’t walk very far, can’t stand for very long, has problems in the bedroom department, gets tired very easily, has pain, gets depressed, struggles some days to find words and speak clearly and all of these things impact on me. I am now the driver whether I want to be or not. I can't walk along the road with my hand in his, or tuck myself under his shoulder for a hug when he is standing, I am the one who has to lift the shopping into the car and bring it into the house, I have to fold a wheelchair, think wherever we go, will it be flat, will there be pavement, how long will he have to stand for, will the wheelchair fit if we hire a car? I do the phone calls, read the mail, cut the wood, cut the grass, check the oil and water on the car and whilst I cope with this and much more I am supposed to be getting on with my life. But what is my life? How do I get on with my life after the life that we have shared? How can I decide what I want to do after years of quite happily being the homemaker? Where do I find the courage and the strength to take on the responsibility of providing? How do I earn enough money? Where do I find the strength to say “no, you can't come for the ride I want to go alone?” How can I can walk out the door and leave Ian sitting on a couch watching his 6th hour of TV for the day without feeling guilty? Some days living with Ian brings an overwhelming burden of responsibility and that makes me want to cry as I know that’s not what he wants. I feel like the whole fabric of our marriage and our life is eroding and I don’t know what to do. Some days I just feel so overwhelmed that I want to get in the car and drive…..anywhere, don’t know where, just somewhere that isn’t here but unfortunately I have to take myself with me and I am not sure that would be any solution!

One thing I can do is count my blessings. I cannot change the fact that my partner, the man I chose all those years ago, is no longer the man I married and if there is a new and improved one in there I can’t see him...........yet. Being positive, however hard, keeps me going, I still have Ian, he hasn’t died, even though there are parts of him that have…….and no matter what I do I can’t replace the parts that have/are stopped/stopping working, they are gone. So what else can I do? I can with your help raise awareness and money for CCSVI(Chronic Cerebrospinal Venous Insufficiency). The word currently sweeping through the world of MS and offering the one thing we need, hope. Treatment for CCSVI is still being developed and researched. It is not available on the NHS(National Health service) and at the moment it is not likely to be available for the next 5 - 10 years. Ian can't afford to wait whilst the MS slowly eats away the mobility and quality of life he does have left and I cannot sit by and watch that happen.

Together Ian and I have spent hours researching CCSVI and the procedure. Despite having no medical qualifications we both feel CCSVI offers a rational explanation as to why Ian has developed Multiple Sclerosis. The onset of Ian's MS came about after he spent three weeks in 2002 with his head tipped back boarding the underneath of a circular staircase. At the time we were both convinced it was this work that had caused the problem. He went from able body to disabled in 6 months. Neurologists didn't agree and wouldn't listen. It may yet be proved that in Ians case that we were right ! and that makes me feel excited, happy, hopeful and also really, really angry as CCSVI is nothing new and maybe we have lost the last 10 years when there may have been no need. Something else I may just have to live with. On Ians behalf I have written to the centers we feel offer Ian the best chance with this "liberation" procedure. Ian is now on the 2011/2012 waiting list. The cost of a CCSVI examination and "liberation" treatment is 7,000 Euros plus expenses, almost the same price as a good electric wheelchair. So, any money I raise from this article will be going to Ians MS liberation fund. If Ian gets any one of the benefits that appear to be possible, then he may never need an all singing all dancing electric wheel chair, he may even be able to go back to work. At worse this awful disease may be halted in its progression and that would truly be, for both of us, a miracle.

I don't know what our future holds for us. One thing I know for sure is that no matter how bad Ian becomes, or how fed up I feel, he really is the man of my “dreams”, even if the day comes, when I only get to meet him there. Behind this illness there is still “my” Ian, the one I bumped into outside the newsagent 32years ago. How can I be sure? Well, it’s a bit like the sun on a cloudy day, you know it’s there even if you haven’t had a glimpse for a long time.

Debbie Andrews

Please, if this article has made you smile, laugh, cry (even with laughter) would you donate £1 or €1 (or more if you want to!) towards Ians MS liberation and forward this link to anyone you know. I only need 7,000 people to read this and donate a €1 or £1 and the liberation is paid for! Thank you for taking the time to read this and if you did donate, thank you from the bottom of my heart for helping us.