Hey everyone, how are you all?
So… “Talking to people about MS who don’t have MS” does anyone else get fed up and frustrated with this? Yep me too!! Especially being 27 (diagnosed 24) and having to adapt my life in ordering for me to enjoy it to its full potential… The thing that really irritates me is when people comment about it.. or if I’m struggling and I tell people that I’m struggling.. they either think “I’ve done too much or over done things” or “I just need to rest more and get an early night”
Recently my MS flared up and I had tremors in my right arm and hand… It was automatically assumed that I had over done it and that I needed to rest more.. which yes sometimes I totally agree and I know when I need to just relax and rest.. I’m learning to know my body and to know when fatigue hits — yesterday is a great example.. I was quite fatigued and my arms & legs felt like dead weights.. which I now know is the humidity of the weather.. so I knew yesterday I needed to be slower and get an early night, which I did and today I feel a little better. However it just irritates me when people don’t think I’m being sensible or not prioritising… I plan, organise and prioritise every single day! Yes I’ve found that really helps me and keeps the every day stressed at bay.. plus I LOVE my #bulletjournal.. but being 27 and having to organise, plan and schedule normal day to day things can sometimes be frustrating.
An MS flare up can happen at any given time with no explanation.. I spoke to my neurologist about this when I had my second big relapse this year.. he told me to stop looking for explanations… Flare ups and relapses can sometimes just happen and we don’t know why…. So this is what I’m going to say to people from now on lol!
Also.. I need to learn that when I’m explaining to someone that I’m struggling or my MS is flaring up.. their response is theirs.. not mine… I’ve done my bit in making them aware that I’m struggling.. if they chose to accept it or not is their problem.
I’ve started driving lessons.. 2 hour lessons every week and I recently spoke to people able how the 2 hours is getting too much for me.. their initial response was “oh no it can’t be that bad” you see?! So I stood my ground and told them that I am struggling with them.. but also that I’m going to find a way to help myself AND still learn to drive… Like dropping down to 1 hour lessons a week.. and see how that goes.. I’ve learnt it’s all “trial and error” with MS.
My lovely blogging friend Surviving Life’s Hurdles wrote a lovely post the other day “What would you do with your life without your chronic illness” I loved this post and for me I think if I had never been diagnosed with MS.. I wouldn’t be as organised and I wouldnt think about little things.. and I would travel without having to think about “rest days” but this is the way things are now and you just have to live with the cards you’ve been dealt. www.survivinglifeshurdles.co.uk
I feel better already speaking about how I feel on here.. as I’m sure people who read this will understand. Explaining any chronic illness I’m sure is just as hard sometimes.
Thank you for reading this post.. does anyone out there struggle with talking about their illness or explaining it to others who perhaps don’t understand? I’d love to chat about it.
Have a great day!
Love Hannah xx