When I feel well my energies go into my mauscripts. During bad patches I visit http://www.myelopathy.org and myelopathy facebook pages. I’m not wallowing in myelopathy drama I’m simply hanging out with fellow sufferers. People on these sites get it in a way others do not.
Myelopathy is lonely. No matter how hard you try to hang on to the strings of your old life, they slip through your fingers. I’ve often felt schizophrenic because my physical state can alter hourly and this impacts on my mental state. So many of you guys have talked about friendship and how they peater out as your myelopathy develops. There are lots of cases where even family have dismissed your condition and made you feel negative about yourself. That’s why people like @iwansadler and J J Anthony are so important. Raising awareness of this disease is essential if we are to recieve the support we need and for friends to understand our limitations.
Socialising can be hard. People judge. They think it’s odd that sometimes I’m in a wheelchair and other times I’m walking in the High Street. They assume that because I’m smiling and laughing I’m not in pain. People understand cancer, ms, alzhimers – they do not understand myelopathy and if that means they drift away from you then it might be for the best because you deserve people who have your back. I have three lovely friends. They don’t judge me. They don’t press me for answers. They visit, bring cake and see for themselves how poor my balance is, how I struggle to stand and walk and how taxing it is for me to communicate verbally.
*Myelopathiers* struggle, we are trapped in a body that just won’t do as it’s told. We are weak yet our bodies feel like 100 stone. We take so much medication that we can’t think straight. We feel so cold we’re lost under layers of clothes. I’m using ‘we’ because we are a club. We are only a keystroke away. Don’t use the small amount of energy you have justifying yourself. You have myelopathy, it’s life changing, everyday it knocks you down but you are brave because you keep getting up.
I don’t have advice on how to help family understand. One of mine asked had I tried Vitamin D.
I would have benefitted from a hard copy of my diagnosis. Just like an optician gives you eye test results. Followed with a leaflet explaining cervical myelopathy with advice on how to conserve the spine.
Training should be given to neurologists on how to support and monitor a diagnosed patient. And stop asking them to walk in pidgeon steps and pretending their operation cured them. It’s hard for families to understand a condition that neurologists struggle with? A physio asked had I tried using a hot water bottle? It’s hard not to run around the room screaming (obviously it’s hard, we can’t run).
As one neurologist said to me…you only have one neck…it can’t be replaced like a kidney or a lung…there is only so much that can be done surgically so it’s up to you to look after it.
To cope with any condition you need family and friends to be understanding. Sometimes that understandiing can only be achieved through hard facts. We need the NHS and medical boards across the world to shine some light on myelopathy, to give it equal status to other neurological conditions.
Through reading posts on myelopathy facebooks I’ve learnt so much, like today – once the spine is damaged it’s hard to control your body temperature – too bloody right it is – if this is the case perhaps the Christmas fuel allowance should go to financially challenged myelopathiers.
Finding this international group of cervically challenged folk has given me this new drive and purpose. I will get my book published and I will try to help my group stay positive and chirpy.
Here’s a litte song that always makes me smile
*made up word*