Lately I have not been very honest myself, I have pushed every feeling I have about this whole thing to the back of my head, but now I can’t because it has well and truly got on top of me and I can no longer ignore it. I have been so scared, so anxious, quite angry and very down in myself. I’m still in the middle of a flare up, my MS is active and luckily I have not been anywhere near as bad as I was this time last year; but every day I wake up and I am on egg shells because I don’t know if that will be the day that things will get worse.
Even though my symptoms haven’t been as bad as they were last year, I am still in pain every day, I am exhausted a few minutes/hours after waking up and it drains me. The only way I can describe the pain is that it feels like my body has been in a fight that I didn’t know about, I feel bruised and battered from the inside; it’s so hard to describe it to people because I look absolutely fine from the outside. The fatigue is also not an easy thing; I can just about manage the house work and maybe walk the dogs - luckily I have very lazy dogs so they don’t mind if they miss a couple of days and I also work from home which has been such a godsend. But gone are the days when I would get up and do yoga, or take the dogs for a walk before work and it makes me sad because I don’t know when I will get that back or if I will. I can’t get through most days without needing a nap, which doesn’t seem like such a bad thing, but it makes me feel so guilty because I’m not doing something productive. The silver lining is that I will get a date for my treatment very soon and while I am grateful for it, I am also terrified because I have no idea how my body is going to react. When I do start it treatment, it will be an infusion that I have to sit in the hospital for 6 hours on a drip for - hopefully I can sit on sims or find a good book to read so if anyone has any good recommendations, please let me know! As far as I know, I will probably be a bit poorly a few days after, but then things should start looking up! I think it has been quite overwhelming because the treatment is not a cure as there is no cure, it will only slow things down; it has made me feel like I will forever be carrying this weight with me now wherever I go and it makes me quite sad because I still don’t know how to handle it. I have not allowed myself to be vulnerable lately and show people how I’m really feeling because I don’t really like bothering anyone or feeling like I might be causing any stress. I am also really not good at saying how I feel which is why I have got this blog because it’s so much easier to write/type. I have coped lately with cracking a lot of jokes about it all, telling everyone I’m fine, that I don’t really notice it and by trying my hardest to make myself look that way too. The truth is that I do not feel fine, all the jokes and the laughs are definitely a coping mechanism, not a day goes by where I don’t notice it and I am really scared. I am terrified that I will wake up one day with a new lesion in the wrong place on my brain/spine and it will affect my speech, or my ability to walk, or any other scary shit that can happen when you have such a random autoimmune disease. It has been thrown on me with no warning or any instructions on how to deal with it and I am just not handling it well lately.
I know this post has been quite personal, but I am hoping that it will help clear my head a little and make me feel a bit lighter.