I was diagnosed with Multiple Sclerosis in October 2007 – I later found out I have Primary Progressive Multiple Sclerosis. I continued working for Richmond Fellowship until the last week of January 2008 (in the London Borough of Barnet), and then I took three weeks sick leave in February 2008 before sending a letter of resignation to my boss (I worked as Administrator for Richmond Fellowship from October 2000 to March 2008, including four weeks leaving notice). I decided to move from a first floor flat to a ground floor flat in February 2009, as I also started to find it difficult to use the staircase.
Here’s a brief summary of how my life has changed since 2009
- Buying a four wheeled trolley to hold onto when I walk indoors.
- Using a four wheeled walking frame (or walking stick) when I walk outdoors (usually less than 200 metres).
- Using a foldable wheelchair (usually when I need to travel more than 200 metres).
- Hospital transport picks me up and takes me home (for hospital appointments).
- Take mini-cabs to everywhere else I go.
- Doing weekly shopping online with Asda and Tesco (grocery shopping) - driver brings shopping bags into the kitchen.
- Somebody does hoovering and mopping, plus sweeps the back garden and driveway.
- Landlord arranges for gardening (removing weeds) to be done.
Although I had three days of Methylprednisolone treatment in August 2009, plus Mitoxantrone Therapy in January 2010 and April 2010 (Mitoxantrone Therapy is meant to slow down the progression of Multiple Sclerosis, as there’s no cure for MS), my condition hasn’t improved. I do fear that my mobility will worsen even further in the next few years, but for now I don’t need much support indoors (well, it’s only cleaning) so in that sense I am lucky (compared to others with MS) – I have weekly shopping and medication delivered to my home address whenever I need it, which I’m grateful for – there’s some people in the UK who don’t have the support I’ve received (generally speaking), let alone other parts of the world.
- With people who have Multiple Sclerosis or Lupus and have difficulties with their mobility, they can use crutches to walk (or a walking stick). Outdoors, they can also use a four wheeled walking frame. Indoors, a four wheeled trolley can be used. Contact your local council (e.g. Social Services) to ask if you can get any of these items free of charge.
- The NHS Wheelchair Service can provide wheelchairs free of charge, and someone will visit your home address once a year to check the wheelchair. You need to be referred by your GP to the NHS Wheelchair Service.
- For hospital appointments, some hospitals will provide transport (ambulance or car) where they pick you up and take you back home, so call the hospital or your GP to arrange this (it’s likely your mobility will be assessed with a few questions before transport is booked).
- Occupational Therapists can arrange for grab rails to be fitted for the bath, or to give you a bath board to sit on.
- As for essential gardening (e.g. removing weeds), if your landlord is council or housing association they should do this for you.