July Meet-up!

The next support group meeting is July 2nd, and will be held at the Tobacco Factory, North Street, Southville. Anybody is welcome to come – family, carers, children. If you would like to come, please can you look at the menu, and fill in the contact form appropriately If you do wish to eat, please can you let us know by Wednesday – appologies for the short notice. Do not feel you have to eat, if it is too much. We look forward to meeting you! Map to venue

Independance to total dependance

If anyone had told me back in September that by December I would be wheelchair bound, unable to do many things for myself and at the beginning of a long stay in hospital, I would not have believed them. However, that is exactly what has happened to me. I have gone from running the house, supporting my husband and children and running my own business, to being totally dependent on my husband, unable to move around the house because the wheelchair won’t fit, and unable to go out without assistance because of wheelchair unfriendly pavements, hills and my lack of…

Blue Badges, or rather the lack of them!

The last few weeks have been punctuated with rejections and successes. However, the most unexpected refusal was that of my blue badge. My FND symptoms only started in November, but they have resulted in me currently having to use a wheelchair, both inside and out. I was therefore not expecting a refusal for my blue badge. This goes to show how naive I am, and how much I still have to learn about the system. For many people a blue badge is a passport to living, not only in the city of Bristol, but much further afield. Without it, basic…

Spoons!

I have recently come across an essay in which spoons are used as a way to describe the way in which those with a chronic illness have to ration their energy reserves to get through the day. (Each spoon represented a unit of energy, or the effort required to do a certain activity). The author was trying to describe to a friend what it felt like living with Lupus. Whilst my diagnosis is totally different, I feel today like I have already used up all my spoons and I still have the rest of  day to go. This has got…