Trying to explain to someone how MS or any invisible illness makes you feel, can seem like an impossible task. Especially when people around you cannot physically see that you need help or just need a day of rest.
This weekend I’ve suffered with numb fingertips in my right hand, double vision and spasms in my back. Although not a very severe flare up, it has made me feel totally wiped and I’ve had to restrict and adapt my plans for the weekend to make sure I don’t over do it and make myself worse. The girls I live with are completely understanding if I have to cancel plans and will always help me if I need it. They have been through the journey of my diagnosis with me so have learnt about MS at the same time that I did.
As you may have noticed, I have no qualms with talking or expressing my feelings! However, trying to describe my feelings and symptoms to people I don’t know can sometimes be a challenge.
‘The Spoon Theory’ is one very good way of trying to explain to someone how you feel when it’s not visibly noticeable. I would definitely recommend reading it and sharing with friends or family if you are finding it difficult to describe your symptoms.
Giving your MS an alternative identity can also be a good way to make your symptoms become separate from you as a person. The below link details the book Jo Johnson has
written which does just that. It was my Mum that found this information,
which may just be one of the most useful tools I have found to cope with my MS. We decided together to call my MS symptoms ‘Bella’ (aka Bella the MS bitch). If I’m stressed out, Mum will always say ‘don’t let it get to you, you know it’s only going to aggravate Bella!’. We try to prevent Bella from making an appearance in my life as much as possible!
Getting an MS card to carry around is very useful to make sure that in any situation, you can get help if you need it. You can order one of these from the MS Society website and I go nowhere without it in my purse! I find it a quick and easy way of explaining my MS without having to reel off every symptom in the book!
What do you use to describe your symptoms? If there are any other good ones you have, please share! ☺️