How many of us have heard the above phrase?!?!
I’ve heard it luckily only a few times.. however since being off with this relapse and now that I’m getting slightly better I get “oh when are you going back to work?” “Are you going to go back sooner?” “Why aren’t you going back now?” “Why are you going out when you should be sick?” “How can you go out and look around at some shops but not go to work?”
I find this really difficult and hard to handle when people ask me the above questions.. and it’s even harder when my brain over thinks it’s as it usually does and I have this questions in auto-pilot whizzing around in my head.
I’ve had this battle recently and instead of getting angry, I try and educate… I try to explain how I feel.. explain that yes I’m making more of an effort and putting makeup on and going out for short trips.. but I find it so hard and it almost knocks me back when I get the above questions asked.. after this recent episode I now feel that I don’t want to make an effort or do my hair and put a bit of makeup on… Because as soon as I make myself look reasonably appealing……. Then…. I definitely.. DONT LOOK SICK! At least with no makeup and my hair a bit of a mess I look like I’m not overly well.
Through this recent relapse I went through a phase of being terrified to leave my house in case I was seen out and therefore assumed that I was well and “why wasn’t I at work?” So I just stayed indoors… Yep… I didn’t leave the house… At all!! It got to a stage that if I left the house id have an anxiety attack.. and I would feel everyone was watching or spying on me… I felt hunted!
Just going to the doctors was a big challenge because I wasn’t at home in bed as it were… My doctor told me that I needed to get out of the house.. that I was allowed to leave the house and do things as part of my recovery… I went away to my Aunt’s (as you know from my recent post) and felt the confidence coming back… The more times we went out (only little trips) the more safe I felt and by the end of the week I was starting to feel more myself again… Something which I hadn’t felt in a long time.
Then the questions began again…. So… Facing my fear dead on… I spoke about it.. I turned it around and explained exactly how I felt and how MS affects me… How life is really bloody hard sometimes but I still smile and carry on… I was asked how it makes me feel… I said this…
Imagine you’ve gone to bed and forgotten to charge your phone…. In the morning you wake up… You’re on 85% battery.. the night didn’t do too much damage… You manage to get through the day.. doing all your things and get home with 50% battery… Feeling pretty proud and pleased…. You go to sleep And once again… Forget to put your phone on charge… You wake up the next morning… 15% battery!! You go to take your charge to work but… Forget.. so you now have to get through the whole day with 15% battery on your phone… Do you manage it? Probably not…
This is how I feel most days.. although.. I sleep well… I get about 8 hours.. I do all the right things (is there even a right thing to do?!) And I have to manage because I like many others I don’t have a choice.. and when we are knocked down… Please don’t judge us when we go out… Maybe for some of us it’s the first time… That’s quite a scary time.. believe me I’ve been there.
I was then asked about if I do things to manage my illness? And what about food? And I have to admit… This made me a little angry…I manage EVERY SINGLE DAY!! Always trying to find ways to help myself… Using my Bullet Journal every single day to manage fatigue and write down symptoms and meal planning etc…. Now with food.. I was asked if “I cut things out of my diet” and that answer is yes I have… I’ve cut out Caffine, red meat, some dairy products and refined sugars… I try to have spinach in every meal.. but do you know what??!! WE ARE ALL HUMAN!! we all have periods of “I must have Chinese take away now!!” Etc.. but that’s just life.. some of us cant go through life restricting things we love just in case it might cause harm?!
I’m just an ordinary girl… Living with Multiple Sclerosis… A disease that you can’t see… When I make an effort and put some makeup on and go out for a walk.. it’s because I’m doing it to make myself feel better… I’m doing it to help and aid my recovery.. because believe me inside… Most of the time… I feel pretty rubbish… There are times however that I feel good and alive and I treasure those moments!
Basically this is a blog post for “Normal” people who don’t understand… Who dont get it that I look well and look fine.. but why aren’t I at work?!
Well my friends… Here is your answer!
Sorry I needed to get this off my chest
Sending much love to all