CIDP

I have Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP), a very rare autoimmune disease which has severely affected my mobility. My peripheral nervous system is under attack by my immune system. The myelin sheath which surrounds the nerves is damaged so signals from my brain cannot get through. I cannot walk unaided (use wheelie-walker around the house) and outings are accompanied and in a wheelchair. This disease affects patients in different ways and the treatments are also varied. If one patient responds to a certain treatment, it does not mean another patient will respond in the same way. There is no known cause and the prognosis is uncertain for each patient.

My symptoms began in late July 2008, shortly after my return from a wonderful overseas holiday where we walked everywhere. My legs began to feel "abnormal". I had to think about walking, taking each step, as my feet gradually became numb. I had numerous blood tests, three MRIs, CAT scan, nerve tests but it was some time before my "difficult" case was diagnosed as CIDP. I've been in hospital three times. Currently I'm being treated with Methotrexate and receiving fortnightly infusions of immunoglobulin (IVIG). So far there's been no improvement. I attend hydrotherapy three times a week, which is the only exercise I can now do, apart from walking (dragging or swinging one foot after the other) with my wheelie walker.

I've joined an on-line Yahoo discussion group which has been invaluable in learning more about this rare disease from others around the world who have it. I am optimistic that I will eventually have the treatment that will have me walking again. In the mean time, I try to have a positive attitude and live within my physical limitations.

Haircut

I'm having a "good" day with my illness. I slept well last night, no spasms, and my legs feel "okay" today. I breezed through hydrotherapy this morning, very different to Monday. I visited the hairdresser for the first time in months but was prompted to go when my 89 year old friend, Billie, said to me last week that I needed to go for a "colour and cut" so I would feel better. My visit to the hairdresser was actually easier than I thought it would be in the wheelchair. My wheelchair is actually more comfortable than the hairdresser's chairs and I was also wheeled to the washbasin which bent to accommodate me. So there's really no excuse for not going more often.

My birthday

On ANZAC Day I "celebrated" my 56th birthday. We had beautiful sunny days for the weekend. I enjoyed a birthday dinner with my family. We took some photos, including a few of me in a wheel chair. I will hopefully look back on these photos next birthday and remember this time when I couldn't walk, but I will be walking then. I am now having fortnightly IVIG treatment so look forward to having some improvement in my walking.

Hospital

Last week I spent a week in hospital for treatment of my CIDP using intravenous immunoglobulin over five days. The treatment was fairly comfortable though getting the canula inserted was not a pleasant experience, but of course necessary. When not being infused with the treatment, I was on a saline drip to keep my vein open so was hooked up most of the time. With my disability, it was difficult when I wanted to go to the toilet or shower, taking the drip with me and being helped on to a toilet/shower chair on wheels by two nurses. At times they were all very busy and I was desperate but fortunately no "accidents". The staff at the hospital were very good but there are not enough of them to cope sometimes, especially in the mornings. The food was quite good. I was glad to return home because in hospital, understandably, the patient fits in with the hospital routine which doesn't always coincide with your own body routine. I will have follow up treatments as a day patient and hope to see some improvement in my condition in about a month.

Another merit

Last night I was very pleased to receive a "Merit" for my latest QCG club competition, the subject being "Music". My photograph "Harmony" is of my violin teacher, Susi, who very kindly and patiently posed for several photos, even though she said she was "not photogenic" (I disagree). I am happy with the photo and more so that the Judge deemed it worthy of a merit.

Slumdog Millionaire

Terry and I have been to see Slumdog Millionaire which was an excellent movie. We'd planned to see it some time ago, before it won the Academy Award, as we'd both enjoyed Q&A, the book on which the film is based. Set in India, a young man is on the brink of winning the top prize in a "Who Wants to be a Millionaire" type quiz show when he comes under suspicion. Authorities and the game show producers cannot believe the young man could possibly have known the answers to the questions and believe he must have cheated somehow. The film then looks back on his life and reveals how his life experiences brought him the answers. Finely acted, beautiful scenery, confronting, great music. This film is highly recommended. Also one of the great things about this outing - we went to the Eldorada cinema at Indooroopilly. They have excellent disabled access and the staff were friendly and helpful.

Toenail cutting

One of the things that highlights my current disability and lack of independence is that I now need my husband to cut my toenails. He is my official "carer" 24/7 and does almost everything for me, for which I am very grateful but wish it wasn't necessary. He does all the cooking, housework, washing, ironing and he helps me dress and shower. Fortunately, I can still use the toilet on my own, but is toenail cutting one step up from that? Despite my disability, I am doing my best to keep a positive frame of mind but at times it can be difficult to maintain that mindset. I've been reading Practising the Power of Now and learning to meditate. I had always been an independent person in control of my life so that loss of control is the hardest to manage and I have to guard against thinking about that and focus only on what I can do - not on what I can't. My neurologist believes I may have both transverse myelitis and CIDP but my case is so complex, I'm not sure he really knows. Anyway, "live for the moment" and "always look on the bright side of life." Cheers!!