Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Barbara

How do you explain to people that just because you look completely fine does not mean that you feel ok - this is a problem that is regularly experienced by people who do not outwardly look any different.  Barbara has explained how her MS has impacted on her life.

Thirty five years ago when my two children were small and I was a single parent I was diagnosed with progressive Multiple Sclerosis.  To say it changed my life is possibly no understatement.

Like most people I love sunny days and spending time with  my family and friends.  I also love my weekly singing sessions with the Tenovus choir.  The odd tipple of red wine is also welcome and some may say that my singing even improves afterwards! 

If I had to list things I do not like I would have to include the rain, miserable people, being tired and not being able to pursue what I want to do.

As no two days are the same I have to plan my life on a weekly/daily basis. I try not to plan too many events in a given time, which is frustrating, but the severe fatigue from doing too much is unbelievable.

I recently gave in and invested in a mobility scooter which was a really hard decision for me but it has actually given me back my freedom!

MS manifests itself differently from person to person and mine affects my balance.  I sometimes have a major balance malfunction and appear drunk and it restricts how far I can walk now. Basically, my head and heart want to do so much but my body has other ideas!

MS is invisible, except for when I appear drunk and lose my balance!  Because there is no obvious outward signs people assume the worse! They also don’t understand the symptoms I experience, the constant tingling and discomfort I get throughout my whole body, far worse when I am tired sometimes preventing me getting to sleep. Its invisible and people just don’t get it, I do appreciate that it’s very hard to understand and have pretty much stopped trying to explain.

The Rare Project is important so that people understand that its not a case of one disability fits all, every one of us, disabled or not, are individuals and should be respected. 

You can meet more people who are taking part in the rare project by clicking here.