This brings me onto the social stigma against taking medication. I feel frustrated that so many people do not understand what it is like to have to take medication just to feel human and be able to get out of bed and have a normal/semi-normal day. This hasn't been directly aimed at me though I do feel people don't understand but I have seen a lot on the internet - particularly on Instagram where I follow a lot of people with the same illness as myself. I am fully aware that I am actually one of the mild cases compared to others and am extremely lucky that I am able to work. Some are completely bed bound and require help with everything we would take for granted. However, even these people are criticised for taking "too many painkillers" and "not being active enough". It hurts and is frustrating as this is not the life anyone would choose. I do not enjoy spending most of my summer holidays drugged up on codeine and laying in bed around 70% of the day. It is NOT a 'Sleeping Beauty' illness that people have in their mind where we enjoy sleeping and resting. The reality is that everyday hurts, resting is essential after any physical exertion such as food shopping (which most people would not see as physical exertion). The constant headaches, nausea, lack of temperature control and dizziness make any simple task much harder than it should be.
If a person has diabetes or another illness similar, they would not be told to stop their medication. So why should it be different because I have an illness that people can't see? Everything I take benefits me. I take the anti-depressents because they help me sleep - which it vital. I take vitamin D because my body is deficient. I now take mebeverine to stop my stomach spasming. I take iron and vitamin B because it helps give me more energy. I take ibuprofen when my body is stiff and it hurts to walk down the stairs. I take codeine because it is the only thing that dulls the pain enough to allow me to live a normal life. And finally, I now have to wear compression socks to aid my circulation and stop my blood rushing to my feet. No, it isn't ideal and it isn't what I want. But at this moment in time, it's all I am able to do and it suits me just fine.
One of the hardest things about CFS/ME and fibromyalgia is that they are completely invisible. From the outside, I look like a normal, healthy 23 year old. No one, apart from my family and Adam, has seen me at my worst and they don't see the pain I endure on a daily basis. They see me on my good days where I'm doing normal things. I respect that it must be hard for others to understand but I just want people to try.
This is NOT how I want to start my day but it is better than giving up.
I have tried graded exercise therapy, didn't work. I have tried ignoring the pain, didn't work. I have tried heat pads on my limbs, cold pads on my head, didn't work. I am not at a loss though, codeine helps. So I will stick with it. I often feel like I'm being told off for not trying anymore. I am. Every day is a constant struggle and I know I am winning. I could let it take over but I don't. I stay as positive as I can but emotions get the better of me at times. I'm tired of being embarrassed when I have to turn down plans because I won't have the recovery time, I'm tired of popping pills in front of people because the pain is so bad, I'm tired of people questioning why I'm wearing a wrist support, I'm tired of explaining to people why I go to bed at 9. But more than anything, I'm just tired of being tired. No matter how much sleep I get, with CFS and fibromyalgia, I'm always going to be tired - tired to the point that I cannot function which is hard for most people to understand.
Things aren't all negative though. Since starting this blog, I have had so much support from people and I am so grateful. Many have offered advice, shared their own stories or just congratulated me for raising awareness. I feel some people may get bored of my constant posts, but my illness is a big part of my life so while everyone else may be posting pictures of their nights out, I post about my days in bed!
On a much more positive note. I'm going back to work tomorrow! I don't know where the last 6 weeks have gone but I'm ready to go back. Having a routine benefits me health-wise and I know my body will hate for the first couple of weeks, I'm sure I'll settle back in quickly. I'd be lying if I said I wasn't nervous. I'm not sure how I will feel and obviously at work I can't take myself off to bed and lie down! But I've done this for a whole year now and I know I can do it. I'm excited to be back in the classroom with my little lovelies and their little faces always keep me going.
Apologies for the rant, it has to happen every now and then! xxxx
No comments:
Post a Comment