Dear Blog,
I always knew in my heart that if I ever did open my heart and share my personal own story of M.S. it would be very emotional for me, and for everyone with M.S. their own personal journey is very unique to them. 1 of self discovery, at times a lot of sadness and isolation as you slowly come to terms with a life that will never be the same way again. There’s no easy way for anyone at all to handle it. I started off using 1 walking stick to now using a indoor and outdoor walking frame, and for nearly 2 years now I’ve been housebound, I can only go outside if someone pushes me in my attendants wheelchair, and usually then I have to pay for it too. I used to get out sometimes going to the hairdressers,theatre, cinema, Blackpool, into the town centre and, my favourite of all cinemas, the Manchester Printworks cinema which I really loved going to.
In April 2004 I contracted Chicken Pox. Initially I had been told a dr. to just go home, to try some camomile lotion to maybe relieve the itching, there’s no treatment for Chicken Pox I was told. My own G.P. then visited me 24 hours later at home, looked me over closely and said there was a treatment, that he would deliver some medicine for it, “take the medicine and you should then be ok”, a few couple of days later I phoned my G.P. ‘s surgery back, “I’m in pain, it’s now inside me.” I blurted out and I was very frightened indeed. I didn’t even know at the time Chicken Pox can do that. Fairly slowly the itching went and I then started to get better, but that was far from the end of the story for me. I started to feel very weak in my legs and knee caps, had constant pain, and had near constant problems with my balance. My G.P. then said something’s not right –  referring me right away to the local hospital’s assessment unit on that the very same day. When I got there various doctors rubbed my feet and kept banging my feet with their little hammers, why they were doing that to me was never really explained to me. My high anxiety levels and my Autism made it even harder to comprehend. After constantly being banged with their little hammer I begged them to stop as I felt distressed. In the end I was diagnosed with Transverse Miletus – that’s inflation of the spinal cord to you and me. I then bought wooden a walking stick from a shop that mended shoes. I was very aware my balance was much worse in my left leg, although my G.P. advised me to use the walking stick in my right hand while using it, but it only felt right in my left hand, so my G.P. said just go with it then which I did at the time. I was also facing a legal action sort of issue, so there was always a constant stress going on in my personal life. Then I had a fall in my local Sainsbury’s store, my knees and legs just gave way. I remember it was a Tuesday as that is the day my magazines come out, that I loved so much. I then I had yet another fall and was admitted to hospital for a 2nd time, and they did a brain scan which then confirmed lesions on my brain which finally confirmed the M.S. At 1st they thought it was `Relapsing Remitting` M.S. I was very upset and visibly shaken when I told my aunt on the telephone at the time with everything extreme going on, and the muscle tension that had plagued me since aged 11. I tried desperately to hold myself, and what was left of my vital routine together. Me and my Ex then broke up which ripped my life and heart apart, and I moved away to start afresh. By this time I used a walking frame outside and an indoor 1 inside. I tried to keep going but after a number of falls that took place indoors and outside  I quickly became housebound and I could only go outside if somebody pushed me outside in my attendants wheelchair. This was a massive upheaval and lifestyle change, which even now I’ve never really mentally recovered from. The Powers that be only consider somebody’s needs as going through the motions of life, no thanks! There was simply no funding for an electric wheelchair that could be folded into a car, which would have meant somebody could’ve pushed me but the potential may have been there for to me to use it in some places, although due to my ongoing co-ordination difficulties associated with my M.S. and my learning disability, this may have never been possibly anyway. We will probably now never know. I could never use a mobility scooter, there’s more on that story on the blog on my website titled `My mobility scooter`. My late aunt wanted me to keep my social needs going, she knew that would be the only way I’d really cope. She was terminally ill at the time and is dead now, but my worsening M.S. made it impossible to achieve that. I also, for a considerable time now, have had continence problems. Laxido and Movical sachets are really the only treatment for this horrid issue and I may need surgery to remove my piles. With all these ongoing issues I feel very undesirable, no real sexual emotions, just utterly emotionally alone and numb. My Ex is brilliant with me but his big C issue (commitment) makes me feel like I’m in a room with him but he’s not really there. I love him to bits but unless he reconciles his own personal issues in some way I really fear for the future. Social workers, I’m having a hair wash and I’m going to meet my needs in my own way not yours. The real experts in all this are disabled people and those close to them, you should never make your own clients feel they’re paying for care that you would see as unreasonable for yourself, when yourselves and able bodied people make those very same similar decisions every single day. Yes, money is a big factor, but if people were not paying you and your managers there would be more money for our care/support needs – real personalisation, regardless of money, should be made a viable option, offered not just a small say in such matters. Your high charges for limited social care is a complete utter disgrace too. Who me?Angel
I attempted suicide by leaving the gas switched on. This was 2 years ago now approx I tried to kill myself, I put the lives of myself and my neighbours in jeopardy. Looking back on it, it was losing my personal freedom, social needs, and my aunts recent death, also coupled with a drug that greatly altered my mood. I had been on a low dose and I became suicidal (Risperdone). It all came together and I had a complete meltdown/breakdown.
Just before I looked at my emails tonight on M.S.N. I think it was, a photograph came up of H.R.H. William and Kate on their royal tour saying that nude pictures had now been published by a Dutch newspaper. I feel for the royal couple in all this. Good luck to them, and Kate keep your dignity girl and your head held high, you tower above these people, always remember that. FreezingSick smile