Recently I saw the amazing and beautiful Nic Chapman from Pixiwoo speak about being diagnosed and living with Multiple Sclerosis. Her YouTube video so so moving and inspiring and good on her for making it as I’m sure it was very hard to do so.
I feel so passionately about talking about Multiple Sclerosis as I feel noone really talks about it… I hear a lot of people saying “they feel people are bored about it” or “I just say I’m fine because people get fed up of me feeling ill all the time”.. I got so fed up of this that I decided with the help of my internet friend and fellow MSer Natalie (survivinglifeshurdles.com) to set up a FaceBook group — http://www.facebook.com/groups/718223168361813/
I then saw yesterday (Mon 10th July) Nic Chapman being interviewed by Lorraine Kelly about living with MS.. again great interview and I love Nic’s positive outlook on this illness…. However, I do wish they’d interview an ordinary person living with a chronic life long illness like MS as some of us find it hard to train or go to the gym regularly… We also unfortunately don’t have the luxury of having our meals cooked for us everyday… I admire and love Nic as well as Pixiwoo and think she’s an incredible woman.. working so hard to where she is now.. she mentioned about not letting MS define her & not letting it affect her.. she knows when to rest and she lives life to the full, which is fabulous!
This is how I… An ordinary person lives with Multiple Sclerosis…
Every morning apart from Thursdays and Sundays I get up at 6:30am and get ready for work.. I then work 9:00am till 5:30pm getting 1/2 hour break in the morning and an hour in the after to which I rest on both.. I never go out on my breaks.. or very rarely as work can get quite busy.. I get home at roughly 6:15pm… I normally rest for 1/2 an hour and then get dinners or lunches ready for the next day.
My partner helps me either cooking dinner or making lunches, however I’m the one who plans and researches all our meals and works hard planning them all.. after this it’s usually about 7;30pm-8:00pm… I then head upstairs and get my bag and clothes ready for next day… 9:30pm meditation then sleep.
I have to plan my days strategically in order for me to get through the day.. Fatigue affects me every single day.. sometimes it’s worse than others.. but like all of us.. I carry on going.
I get told a lot by various medical professionals that I need to be active and exercise in order to possibly help my MS…. My problem with this is… Have you just read my daily routine? After all that how do they expect me to exercise? On my day off on Thursdays I usually have a driving lesson in the morning for an hour, which exhausts me afterwards and when I get home I need to rest for a bit and then I can do things that I want to do.. Sundays are for seeing family and friends and most of all…. Relaxing!
I struggle quite a bit sometimes to live with MS and balance my everyday life etc.. I use my Bullet Journal a lot to plan my days in order for me to manage and get through each day.
I do feel sometimes that all my energy goes into work.. like this… Wake up, go to work, come home, sleep.. you know.. that cycle… I know a few some people may think “why don’t you do something after work” well I would love to.. sometimes I really would… Also sometimes on a Wednesday night I see my sister, now that the weather’s nice we like to go to our local country park for a walk… However depending on how busy I’ve been at work it’s usually difficult to find the energy to push myself that little bit further and also I need to cook my dinner so again.. more energy to find.
Working full time is great because I feel like a “normal” person lol.. however I can’t deny that working full time (getting up early and finishing late) organising home life and having time for myself is hard.. I have been contemplating reducing my hours since this current relapse.. even to just 4 days a week, however it’s a money issue.. I can’t quite afford to that I mean I could pay the bills, I just wouldn’t have any money left for myself. So i have applied for PIP (Personal Independence Payment) it was absolutely terrifying and set off a few anxiety attacks to a point where I stopped filling it in for a while and had to ask for an extension… It’s all sent off now and I’m just waiting to hear back (trying hard not to think about that)
If I get awarded this extra help, it will mean that I’ll be able to reduce my hours at work and then be able to start living my life a little better and a little less regimented.
I want to share and spread the word on what living with MS is like.. I love life to its full potential most days, however sometimes I can’t and being a relatively young person that sometimes is hard to deal with… I want to talk about the reality of living with MS. We all put on a brave face and “slay the day” (I love that saying) and don’t let it define us, however I feel people need to know the bad stuff as well as the good stuff… How it truly is! Im a positive person so I will always try and turn negatives into positives.. but sometimes people need to know the reality.
I watched a vlog on YouTube today of one of my favourite bloggers Hannah Gale, she was taking you through a few weeks of her early pregnancy, about what it felt like etc… I thought it was brilliant.. the true reality of how she felt every day/week… I also wanted to comment and say.. this is how some people with a chronic illness feels like, I thought it was brilliant and really showed you how it was.
Anyway… This is me… Living with Multiple Sclerosis.. diagnosed 3 years this year… Living each day as it comes… I love my life.. I love life.. but sometimes… Life is hard!
I hope you kind of enjoyed this!