Multiple Sclerosis can be an isolating disease and recently I have really been feeling this way about my life with MS. As much as I know that I am a positive person, sometimes its hard not to get upset over noticing changes of any kind, whether that’s new symptoms, feeling MS has taken things away from you, feeling your energy isn’t the same etc. To be honest, I am the type of person who believes in life you can achieve anything you put your mind to and you can become whatever you dream to be in life. With that said, MS can knock you back and because its so unpredictable can intervene with plans and socializing comfortably.
I always try to look at things on the brighter side of life but lately I cannot help but feel angry, angry at a lot of things, at people and mainly at myself. I feel so anxious and awkward and feel like even simply saying hello to people is a struggle. I think why I feel isolated is because these symptoms I experience most of the time are invisible. There has been so many times that I’ve been sitting with family/friends and because nobody can see the electric shocks or vibrating sensation or fatigue that I am feeling, it can feel isolating. I never really mention it in those moments because sometimes I don’t see the point, like if they can’t see it, are they gonna understand? This is how my anxious mind works, although its true people may not understand but at least they could try if I would just open my mouth and speak the truth about how I am feeling.
Over the past few months, especially over the summer, my fatigue has been really bad. To the point that Id need a rest after a shower. I know that sounds crazy but it is true. The basic task of lifting my arm would exhaust me so much but once again I kept silent and would power on through without telling anyone about how exhausted I was over the simplest of things. After every few steps I would take, I would need to rest. To be honest I am my own worst enemy. Since my diagnosis I have done four 10k’s and the last one I really shouldn’t have taken part in. I feel like I only done the last 10k to prove a point. To prove a point to who though?? In my own mind, I felt like people probably doubt me, they doubt my ability BUT that is most likely untrue. I’ve realised I was trying to prove a point to myself. Don’t get me wrong, it is great to challenge yourself and test your limits but I knew myself that my fatigue was so bad that I shouldn’t have taken part. I just about managed to reach the finish line. I felt so mad at myself for not getting a new PB and I felt guilty for my partner because I knew I slowed her down. After that 10k, I literally couldn’t walk for two days because I pushed myself beyond my limits.
I haven’t met up with my friends in months because I was having bad fatigue over the summer and my symptoms were frequent and to be honest some are embarrassing symptoms and the rest were invisible so I felt that people wouldn’t believe me if I said I was unwell and had to leave etc so instead I just never met up with friends. This worries me because I feel that I haven’t socialised with friends in months, and I don’t even know how to function normally around people anymore. I used to be so outgoing and a bubbly person and now I feel like a misfit. In this way, this is how MS has made me feel isolated. I have gone to gigs and I even won a day ticket to Electric Picnic. I love music so much and live music, I was always that person who would be up jumping around and enjoying dancing and bopping along to the music. I have been struggling with anxiety the past nine years and since my diagnosis, it has put a serious strain on me and my daily life. I used to look forward to gigs and now it fills me with excitement and then dreaded worries and fears. When my anxiety kicks off, everything else that goes along with MS kicks off. The fear of being at a gig and jumping around loving life one minute and walking off because of invisible symptoms can be a huge worry.
Even recently I was at the annual MS conference, it was a great event with great people but I felt like I didn’t fit in, I actually felt so out of place and anxious. This is no ones fault, the people were great but as people got talking, random people, I realised I had no symptoms that any of them had, like literally NONE bar fatigue. So I guess that is one! No one heard of my first symptoms which literally made me feel like, do I even have MS? Do I actually fit in with all these people? I really thought that at an MS event, I would feel at home but I didn’t. Now obviously I know MS is still new to me, I have only been diagnosed just under two years. So I do know that MS is different for every individual with the disease and I know I have so much to be thankful for. At the conference I learned so much from the different speakers and had a great evening with some new friends. I think because I haven’t been socializing in months that this perhaps is why I felt so awkward and perhaps going to an MS conference was very overwhelming. Even though at times I felt awkward, I took a lot of positives from that conference, yes everyone’s MS is different and not all msers will have the exact same symptoms. There was so much information on brain health and its importance so I’ve literally gained so much knowledge from the event and made new friends. There was a lot of talk about medications, diet, brain health, sleep and I took a lot of information home with me which is always a positive.
I recently had my consultation with my neurologist and so I questioned her about my MS diagnosis. Part of me felt like I was going back to the denial stage of my grief. I asked her ; are you definitely sure I have MS? She assured me that yes I do have MS and it just so happens that my very first symptom at onset is a classic symptom of MS but is very rare, like less than 5% type of rare. So I had to laugh at this because it got me thinking that is just my luck. But you know what; I feel better now that I know that, because I guess I am unique and so is my MS and so is everyone’s MS and their MS journey. I feel guilty for feeling this way and for feeling awkward and for cancelling meet-ups with friends but that is just the nature of MS. Sometimes we will have to cancel plans and its not our fault. It is important to look after our body’s, health and mental health and so I propose to myself a new promise, I promise to speak up and not feel guilty about not being able to do certain things but I will never give up and I will always try my damn best to meet up with the people I love.
PS. Sorry I am sooooo awkward 😀