When did people become so judgemental?

Is it me or have people become more judgemental about illness and disability? When I was young, I was always taught that people are all different and some have disabilities or illness, but to treat those people with the same respect.

It seems there has been a lot of headway made in making invisible illnesses more accepted lately, like the new blue badge scheme but it doesn’t seem to change people’s opinions.

I don’t work, I used to work but with my CFS/Fibromyalgia it isn’t possible right now. When people ask and I explain this, they nod and appear to be understanding but then comes the comments;

“You’re young, you should be out working”

“You don’t look ill or disabled”

“You could at least work part time”

It’s these comments that get me down because people seem to think I choose not to work. I don’t choose to live with a limited income, struggling to afford anything for myself, I don’t choose to lie in bed at home, in pain and wishing I could just go out and work like a normal person my age. Some days, all I manage to do is have a bath and then I can’t physically do any more so how am I going to go out and work everyday?

If that’s not bad enough, applying for benefits is the most shameful and embarrassing process I’ve ever been through. When I get assessed, it’s unfairly because physically I look fine. I have to justify my illness, to then be told I got dressed for the assessment so am able enough to work! It’s the pettiest and most depressing system. I don’t choose to go through that, I have no choice because I cannot manage to work but I need to eat.

Older people judge how much medication I take and say I shouldn’t be taking that much medication at my age; like because I’m 25, I can’t suffer with a long term illness. I bought a fold up walking stick this week so I can have some extra support when I go out and have to walk longer distances than the usual. But I am so nervous about using it because I’m afraid people will stare, I’m afraid people will judge me. It shouldn’t be that way. I shouldn’t be embarrassed to do what I need to do to manage my illness.

It seems that people can be a lot meaner now, and that cruel words and comments are muttered too often. Deep down I know I shouldn’t be ashamed of myself or my illness but when I constantly hear judgemental comments and receive judgemental looks, it’s hard to remember that.

My anxiety makes me a bi*ch

Very often, I’m encouraged and pushed to go out to social places by my family and friends. These social places trigger my anxiety and as a result, I become an irritable, snappy, moody individual who takes it out on her family/friends.

Going shopping is something most women love to do but I hate it, I’m an online shopper all the way. But occasionally I go out with family to shopping centres and spend some time shopping. It should be enjoyable and rewarding but it’s a nightmare for both me and whoever accompanies me because my anxiety makes me crazy. My anxiety gets triggered by the unfamiliar place and unfamiliar people and I attempt to soothe myself however I can, and my family try to make it easier and less stressful for me which I am grateful for. But after an hour, I can’t control my anxiety anymore and I want to go home so my personality withdraws, I become quiet and fidgety. I begin to try and rush my family through things and then I begin to get irritated with them. I love my family and I would never take my mood out on them normally but my anxiety overrules that part of my personality and I suddenly find everyone around me, irritating!

I see my family enjoying being out and it annoys me because I want to enjoy it but my anxiety is taking over and I just want to go home so I start to snap at my family for small things, I get moody and refuse to get involved in conversation. I say horrible things and become like a moody teenager who hasn’t got their way.

That person is not who I am, I hate that version of me but in that situation, my anxiety rules and somewhere in my twisted brain, I believe that being snappy and difficult will get me out of the situation faster. In that situation, everything irritates me and I’m annoyed and scared so I turn into a bitch.

My family are used to this version of me by now and they know it’s a sign that I’m reaching my limit and need to get out of the situation but I feel bad for them because they take my snapping and moody comments without judgement and they change their own plans to accommodate me. I take my anxiety out on my family and they just try to help. Irritability is one of the main symptoms I feel when I’m anxious, it’s an overwhelming feeling and it makes me a horrible person to be around. I wish I could control it better and keep it inside so no one else has to deal with it but in that bubble of anxiety, it controls me.

Just another symptom of anxiety that makes my social life hell!

Sleeping Beauty without the beauty.

This past week, the fatigue has been awful. I’d compare myself to sleeping beauty but there is nothing beautiful about me when I’m sleeping! I’ve been sleeping a good 8 hours at nights, waking up at about 9am and I’m in and out of sleep until around midday when hunger and thirst forces me to get up. Two hours later I’m aching and my head feels foggy and drowsy so I have to go back to bed. I sleep for around 4 more hours, get up to have my evening meal with family and then a couple hours later I’m back in bed watching tv until I fall asleep again.

It all adds up and I’m sleeping about 16 hours+ every day which is mind boggling to me because I didn’t know it was even possible to sleep that much. What’s worse is, I don’t feel better after sleeping; I am fatigued constantly and I am asleep within half an hour of hitting my pillow. I don’t know how I’m still sleeping when I’m sleeping that often.

I’ve got my final assignment to write for Uni and my head is so foggy and sleepy that I can’t concentrate for more that 10 minutes, my eyes start stinging and burning and I have to give up. I’m hoping it’s just a crash and if I rest when my body needs, I will start to feel a bit better eventually. I’m worried it might be a complete relapse to the beginning of my CFS/M.E when I was practically bed bound for months. The heat isn’t helping because that increases my fatigue anyway but the weather is supposed to cool down a bit over the weekend, I’ve never wished for rain more!

Also I apologise for any spelling, punctuation errors in this post, It’s the cotton wool in my brain!

How a nice day out becomes a nightmare.

With ME/CFS, a nice day out like I’ve had today with family makes me really happy but I know that once it’s all over, I’ll experience a night and day of punishment for my enjoyment.

I had a lovely day today with family, it didn’t involve a lot really, a trip out in the car to feed the ducks with my niece followed by an ice cream in a small village and a trip to a local farm shop. The whole even lasted a few hours and with the sun shining brightly and surrounded my family, it was a happy and enjoyable trip out. But the whole time I’m out, I have the knowledge in the back of my head that I’ll pay for my activity and the longer I’m out, the more I acknowledge this.

I’ve been home now for a few hours and the first feeling I get is of exhaustion and fatigue that forces me to sleep for a couple of hours. Then the pain sets in, I’ve got pain in all my lower joints and muscles; my legs ache terribly. Then my joints begin to stiffen and this is the point where my pain becomes a lot worse, my whole body feels like jelly because I’m extremely fatigued but my joints have seized up and whenever I move slightly, the pinch and stiffening in my hips and knees is awful. My lower back is always the centre of my pain and right now it feels like it’s cramping up and spasming on and off so I can’t just sit comfortably.

My body feels heavy, like its weighted down and my eyes are constantly drifting closed as my brain craves more sleep. It feels like I’m being punished for enjoying a day out, for enjoying activity and it’s a horrible feeling. I want to be active, I love being out in the countryside and experiencing the outdoors but my body doesn’t allow me to enjoy it fully because I know it won’t be enjoyable for long and the next day will be spent suffering the after effects.

Tonight will be the worst, I’ll have to take my Tramadol which leaves me feeling high and knocks me out the next day, but that’s what I need because the next day will feel worse. CFS/ME is a horrible illness, mainly because of the delayed reaction of the body when it’s been active, I may feel fine today and think I’ve escaped the punishment but the next day will always remind me that activity comes at a price. I’ll ache all over, feel like I’ve got the flu, I won’t want to eat or drink; all I’ll want to do is sleep and a lot of the time, all that can be done is to try and sleep through the pain and the fatigue.

It’s sad that a lovely day out has to turn into a horrible experience, I feel like I should regret my activity but I never do because the moments I can get out into the country and enjoy the fresh air, sun and smells is worth it. I know I might have to spend the next two days in my stuffy bedroom, in pain and wishing for it to end but I’ll never regret what made me feel that way.