Since being diagnosed with MS I haven’t just struggled with my actual balance, I’ve also struggled to balance my life. Now things are back open again after the pandemic, I don’t know how to manage work, social life, exercise, a relationship, hospital appointments, my treatment and housework.
It’s Friday night, I finish work at 5pm and get on the very sweaty busy bus home. I always sit on the downstairs deck of the bus because I struggle with my balance if I go upstairs. I get looks from older people who want a seat and I sit anxiously for the whole journey in case I have to show them my MS Society ‘I have MS’ card. I don’t know why I feel guilty, I have a disability!
The table at the pub is booked for 6pm and all I can think is why did I book it for that time, I’m so tired and haven’t stopped all day. How am I going to get to the pub in less than an hour! I have given up on the fact I will look nice, I saw my eye bags in mirror of the toilets earlier and I don’t have time to fix them.
I get off the bus and my legs start to give way, I only live 5 minutes away from the bus stop, but it seems like a marathon. My legs are so heavy, I’m so hot and sweaty and my hands are shaking.
Finally, I make it to the front door and immediately run to the toilet because as usual my bladder goes into panic mode whenever I’m not near a toilet for longer than 30 minutes.
It’s already 5.30pm, I need to change into a warm outfit for the pub whilst trying to eat something very quickly. I change a few times but I’m not happy with how I look or that I’ll be warm enough sat outside for 3 hours. Too late, it’s 5.50pm and we need to leave. My legs are still struggling, and I feel dizzy, it’s just a 10 minute walk to the pub – I can do this!
Halfway there, I panic even more – I left my mask at home! My boyfriend tells me I don’t need one but I know I need it to go inside to use the toilet. I can’t go 3 hours without a wee! I tell him to go and meet our friends whilst I go back and get my mask. I hate being late but now I have MS it seems like a regular occurrence.
The 5 minutes walking back home is a struggle, I’m panicking. How am I going to be able to sit in the pub for 3 hours! My vision is blurred, my legs are tingling and heavy and I’m exhausted. Finally, I’m back home again – I jump on the bed and lay down for 5 minutes to gather myself.
I want to cry. I haven’t seen these friends for ages because of the pandemic but all I want to do is take my make up off and jump in the bath. But no! I will go out! I get upset that I’ve used all my energy this week on work and now it’s come to my time at the weekend I am struggling.
I pour myself a big glass of water and down it whilst holding back tears. I put my big puffer coat on for comfort, gather my thoughts (and my mask) and head back out. I wish my boyfriend was here to walk back to the pub with me because my legs are struggling, and my balance isn’t great. I am scared of falling over but I make it to the pub.
As I sit down, I’m worried I look ill and sweaty, I try to act as normal as possible and have a sip of my pint. I’ve done it now, I’m here! My anxiety gradually goes away.
Since going back to work full time and being able to see friends again the story above seems to happen way to often. A lot of my days off are spent in bed having long naps but I also make sure that I socialise when I feel up to it. But where do you find the time and energy for things in-between? Housework, food shopping, exercising, stretching, self-care, cooking!? It’s too much sometimes and I feel lost.
Things before which seemed so easy to complete on a Saturday morning before the weekend properly began now feel like mammoth tasks. By the time I have cleaned the bathroom and hoovered the lounge my back will be in agony and I’ll need to rest.
I love socialising and it’s taken me a very long time to overcome the social anxiety of actually going out to public places. Why are so many places so inaccessible? I’ve never realised how many sets of huge and dark stairways lead you to a toilet in most bars and pubs. Luckily my friends are so supportive – they won’t let me go to the toilet on my own if it’s up or down some stairs.
The thing that always feels so frustrating is the amount of energy I use at work. You have to work full time to have the money to live. But if you have MS, some weeks you work full time and lose the energy to live! It scares me that I am so young, sometimes I feel so debilitated by my MS already and that it could get worse.
I’m trying to remain positive and do what I can. Don’t get me wrong there will be some days where I can’t stop crying because I’m so frustrated. If I feel ok – I’ll do a little bit of housework here and there. I’ll plan social events in advance so I can save some energy and I’ll listen to my body while I’m working. I try hard to keep on top of vitamins, yoga stretches and diet because I know it really does help. But I also know not every day is going to be a good day and that’s okay.
All I can do is take each day as it comes and hope for the best!
My name is Sarah and I live in the UK. I have been living with MS for just over a year now. My MS journey started with optic neuritis about 5 years ago and developed into many hospital trips due to strange aches and pains! Steroids, infusions, and injections – I’ve had it all! I'm a student advisor and I love my job. I also love fashion, crocheting and cooking lots of yummy vegan food - I have been vegan for 4 years now, it’s nothing to do with my MS, I just love the environment. Since my diagnosis I have tried to turn it into something positive by raising awareness about MS in the news and on the radio. I also want to support people newly diagnosed with MS and give them hope you can live a great life with MS, you just need to find your own way!
Instagram: @sarahemilyscarce @veganbiigan