Pippa Dawson, C&I Deputy Mental Health Law Manager and MCA Lead, shares her story about living with an invisible disability
Multiple Sclerosis (MS) is a chronic disease that affects the nerve pathways. My body’s immune system is attacking itself and causing damage to the sheath that covers my nerve pathways so instead of the message going through the nerves to where it is supposed to go it does not travel directly there but seeps away like water from a leaking hosepipe. In order to get messages to all the functions controlled by my nerves, I need to turn on my ‘hosepipe/energy’ at full volume yet still get a small trickle out of the end.
The longer you have MS, the more your nerves are attacked and the more damage occurs. Lesions can occur anywhere in the nervous system but mine is in my spine around T3 and T4 vertebrae. This means my legs are badly affected, my hands are partially affected and my bowel and bladder function is affected. Fatigue is a huge symptom and I have to manage that carefully. Put simply: it is becoming more difficult for me to walk and I now use a stick. My balance is very poor and I am prone to tripping and falling and due to the lack of power in my legs it is very difficult to get myself upright again.
I have to manage my visits to the bathroom very carefully and need to know where the nearest loo is at all times as I get messages to visit the lavatory later than everybody else and it takes me longer to get there. There is a real possibility of accidents which causes anxiety and puts me off going somewhere new.
I cannot walk very far now without a rest but I keep walking as if I don’t use it I will lose it.
MS has taken away my ability to walk far, my confidence in my own continence and I can no longer run or dance. If my girlfriends are going shopping for the day, I have to join them later for lunch as I feel if I am there getting tired and slow I will spoil their fun (they would dispute this but still). I used to be a very active person with a regular exercise regime at least four times a week but I cannot do that now. As a result I am putting on weight which I hate.
I still work full time and manage a long commute from West Kent to Central London to do a stressful job, on a daily basis. Unsurprisingly, that tires me out so when I get home I have just about enough energy to prepare an evening meal and then I need to sit down, I am often asleep on the sofa after 9pm even though I am a night owl by nature. I now need help with cleaning my house, doing my garden, my ironing and cleaning my car. Obviously I have to pay for this help.
My future is uncertain and I worry about random things such as how will I help with the grandchildren I don’t yet have! I file my ultimate prognosis in a little box in my head marked DO NOT GO THERE – denial maybe but I prefer to take things one day at a time.
That’s the bad news – but what have I learnt from this and are there any upsides? Well I started walking with a stick summer 2016, I can manage without it on flat surfaces but I am very worried about falling and injuring myself and making myself more incapacitated and a nuisance. Since using a stick I have found people in London are generally very kind and keen to help. I rarely stand on public transport as someone usually gets up and people often help me with bags/doors/other obstacles. My experience is that most people in London at work and ‘out and about’ are kind people and want to help. I now use Access to Work support to pay for taxis to help me cross from my London main line station to my workplace and back again, which helps me manage my fatigue. Work has been supportive of my disability and now I am involved with the Disability Employee Network which is an education in itself. I now have a blue badge with gives me free parking in certain places (Tunbridge Wells where I live for instance) and access to parking spaces everywhere.
I take medication to slow down the progression of my MS and that apparently costs £500 per month. It would be impossible for me to afford this but thanks to the NHS I can have the medication – I imagine this would be a different story in USA. My dedicated MS Nurse is very supportive and horribly overworked. This is the same with my Consultant Neurologist. I have also had free physiotherapy, free disability aids in my house via Neuro OT and many free MRI scans – all of which I am grateful for. We should never forget what a privilege free health care is.
Finally I have support from family, friends, colleagues and my partner which I could not survive without.