"There's your level of disabled, and then there's DISABLED!" š
NEW MS BLOG | āAm I Invisible?ā byĀ @Rubysoho_87
Even prior to my diagnosis when I didnāt know why I was unwell, I was having to cancel plans more often. When I was feeling good, Iād do too much and burn out (which is something I can still be guilty of, but Iām much better than I used to be!)
I was diagnosed when was 24, and I had a fairly busy social life at the time. My friends were supportive, and at first, I didnāt think that I would end up feeling isolated and lonely. Looking back on my life then, I think I was in denial, not in denial of my diagnosis, but I was denying that I needed to make changes in my life in order to try and live well with MS.
I started listening to my body by resting more often, and altering my diet, but my health got steadily worse anyway. I went down to part-time hours at work, and after one of my worst relapses (total numbness on my left-hand side, but I could move), I lost my job. This meant that I lost another form of social contact - with my colleagues.
Before losing my job, invites to social gatherings dwindled, although I had friends who would check in on me, I felt sad that I had to miss out on important occasions such as birthdays. Even the less important times such as a trip to the beach or dinner out. The worst thing was there were times when I probably could have gone (with the help of someone else accompanying me), but I felt that it was just assumed that I couldnāt go. I felt invisible in a way. Social media was becoming my window to the outside world at the time, but it was both a blessing and a curse. I was happy seeing friends enjoying themselves, but I was sad that I wasnāt a part of it.
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I asked one friend why she would be invited but I wasnāt, and she pointed out that if I wasnāt around, people might simply get used to me not being there. Yep, I was indeed invisible. With all of this, I was alone in my flat with my thoughts. I was grieving my past life and what I couldnāt do anymore. At the time it was hard to realise that social media is mostly the best snapshots of someoneās life, but it was difficult realising this when I was in my own head too much. On the rare occasion I went out, I would be anxious about leaving the house, worrying if I couldnāt find a place to sit down, worrying about accessibility, and worrying about peopleās potential comments. Iād try to plan ahead if I was going somewhere in public, and Iād prep any friends in advance regarding my needs. Iāve always found this difficult (although Iām getting better at it now), as Iāve felt like a burden or maybe my friends and loved ones will think that Iām demanding too much. Sometimes I worry theyād think that Iām being over the top or needlessly complaining. In the past Iād sometimes play down how I was feeling. Iāve come to realise though that you need to do what you feel comfortable with, otherwise it could be detrimental to your health. If communicating my needs offends someone, I just leave them be.
After trying Rebif and Gilenya, I had Lemtrada in 2016 and 2017. I was very lucky in that I had a couple of great years symptoms wise following treatment. Sometimes I could almost forget my MS (aside from a burning tingly feeling in my left limbs, and of course, fatigue). I decided to go to Perth in Australia and try out being on a Working Holiday Visa. I had friends there, the climate was perfect for me (low humidity and a dry heat, not always scorching). Plus the air conditioning obviously helped, and living in a house which doesnāt end up like an oven! My MS Nurse thought it was a great idea, although one of my treatment nurses wasnāt pleased as I still had a few years of Lemtrada blood tests to go. So, I found a place where I could get the tests I needed, and they werenāt too expensive. I emailed the results back to my treatment team in the UK, and if anything serious came back, my plan was I could come back to the UK sooner. I was inspired by a fellow MSer and his partner who I met in a hospital waiting room. They told me of their plans to travel for a few months or so. I asked them what theyād do about the blood tests, and they simply said: āWeāll figure it out.ā So thatās what I did. I didnāt know how long I would feel well enough to go, so I made my plans to leave. Social inclusion wasnāt a problem while I was away, which was refreshing. although I was conscious that the MS monster could appear in a flash at any time. I returned eleven months later, which was just in time as my MS started being a monster again.