As I sit here, an invisible person with an invisible illness my life consists of pottering in solitude around my tatty, unwelcome and unsuitable, rented home wondering where my life went. Once, not so long ago, there was a girl. She was tall, slender and full of energy with the most contagious giggle and a twinkle in her eye that always meant mischief was not far away. She was fun to be around, always busy, her house was always full with visitors and she would cook, paint, draw even do her own DIY, there was no holding her back. I haven't seen her for around 12 years and I hardly recognise her in myself now as I feel at least 20 years older.
Although coping with an invisible illness isn't just about how you feel. Yes I am in pain every second of every day but I can manage my pain. I also get horrific migraines and all kind kinds symptoms pop up that I don't expect. What makes life difficult is attitude, not mine. I fight, every day from the second I get out of bed. I fight to get dressed, I fight to get organised, I fight to cope, I fight to stay positive and I fight with loneliness. It's other people's attitude, from my GP, to My Rheumatologist, my physio to staff at my children's school, even my family sometimes and then you, the people I meet, who ask the awkward questions and then give the flat-liners, the answers that finish you off and make you feel like you are a waste of time.
Feel assured I have asked for help so many times, 'please help me get my life back, I will do anything.' Yet I am constantly treated like a hypochondriac, a waste of space, not worthy of treatment. At one point I was left for over a year with two prolapsed discs in my lower spine causing debilitating pain, because it was 'in my mind', until finally an MRI scan revealed the truth, However, this didn't excuse my appalling treatment by my GP, physio and the sports injury specialist who was brought in and refused to treat me as 'I was just refusing to exercise in case it hurt me'. A simple root nerve block and a year of agony was gone.
Possibly the hardest to understand is as the Government benefit cuts have come in my isolation has grown, I have lost my carer as it's no longer financially viable. We had to give up our lovely home with a downstairs bedroom and shower because the bedroom tax meant we had to pay over £400 pcm. We couldn't even afford basic food, heating oil or anything, our only option was to move.
Our first house was a pit, soaked in filth and urine and no working washing facilities, we couldn't even plumb in our washing machine. For two months we lived like this, sending our children out to whoever would have them for a bath and begging people to do our washing while we lived in a stinking house with all our unpacked possessions in boxes around us. Until finally, the landlord refused to do the repairs and we managed to escape into this, slightly improved, massively expensive place.. My partner works 12 hours a day so now I'm coping alone daily, trying to care for myself, we gave up our home and live in this horrid rent, we can only live in half of it as we can't heat it and the children can't use the garden because it is dangerous.It's very expensive and we no longer qualify for help. I find myself asking How can a man who had a disabled child himself, so cruelly allow disabled people and disabled children to live in this way? I too lost a child, I also have a child with a disability but my empathy towards others is huge.
For many years I have felt frustrated, useless and as though I no longer have anything to offer. I craved the need to feel productive again, to be contributing in some way or making a difference. So I made a decision this year that I can't change my life but I wanted to do something that would make a difference to my family and I set up a fundraiser page called Morgan's Log and began working every day to raise money to get my little boy his much needed Autism Service Dog. As I am unable to leave home, my fundraising has been a fully on line effort. Although it is hard work and time consuming, it has given me a whole new focus, we have met other families and parents in similar situations receiving donations from all over the world. Morgan, my son, has Aspergers Syndrome and spends all his free time at home alone after bullying. He has also never been invited to a Birthday Party so I feel his isolation too.
We work on the fundraiser together and it has given us both a mutual branch into the outside world, where the messages of support are so valuable. His dog will change his life when he gets its but finding that I can still do something, I am raising awareness, talking to people, raising funds and I'm busy. Many people tell me what I'm doing for my son is amazing but really if you knew what it meant for you to just get in touch, that's
what's really amazing to me. If you would like to join us to keep up to date, share ideas, help us fundraise or donate, we are always glad to welcome new people. https://www.facebook.com/MorgansLog?fref=ts
http://letsgofundraise.com/fundraiser_detail.php?fundid=101