The guilt of cancelling plans.

One of the things I find most difficult about living with a chronic illness is cancelling social engagements. Before chronic illness I was a very reliable person when it came to making plans and sticking to them.

Chronic illness has made me this unreliable person who might cancel plans an hour before or rearrange plans a dozen times. The most important thing I try to get across to friends and family is that I’m not trying to be difficult, I’m not cancelling because I can’t be bothered or don’t want to meet up. Sometimes I wait until an hour before to cancel because I’m praying and hoping my body will just cooperate and allow me to socialise and be a normal 26 year old.

I had plans to see my sister yesterday and she was going to do my nails and I was looking forward to it! I woke up exhausted as usual but hoping some energy would appear from anywhere. I got dressed, I ate breakfast and did normal things about the house. An hour before I was due to leave, my body just switched off. I hate that about M.E, one minute my body is coping and managing my fatigue and then it just switches off and all I can do is go to bed because I don’t have the energy to stand up for more than 5 minutes or even lift my own arms and head.

Then comes the difficult part which is letting the other person know I’m not well enough to meet. I try to get across how disappointed I am in myself but it always falls flat and feels like I’m making excuses. I feel like I’ve let my friends and family down and I hate it. I hate feeling like I’ve let someone down and it affects my mood so much and is one of the main triggers for my depression.

Eventually I just stop getting invited to socialise and it’s both understandable and devastating because I want to see my friends and family but my body betrays me. I see pictures online of all my friends meeting up and feel sad that I wasn’t invited but also I expect it because why bother inviting someone who is going to cancel 90% of the time. It’s a very isolating and lonely experience.

I wish people could experience just one day in my body, so they’d understand the strength and exertion that goes into just doing basic things like getting dressed and taking a bath. I wish people would understand that I don’t cancel because I’m a bad friend or because I can’t be bothered; but because my body is too exhausted to leave the house.

It’s inevitable that I feel guilt for being so unreliable and that guilt is like poison; it infects the brain and makes me feel worthless and hopeless. I can only hope that my friends and family take a minute to think about how cancelling plans affects me and how disappointing it is to be stuck in bed instead of being out, socialising ad enjoying myself.

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.

Why CFS means I look terrible all the time!

When I see women in public who have their hair all perfectly straight and their make-up is done flawlessly I get seriously jealous. Because there I am, with my hair tied up but still somehow flying around my face, my make-up was there but now it’s either been done in 5 minutes or it’s sweated off my face.

Getting ready to go out is hell for me because by the time I’ve got dressed, wrangled my hair and put make-up on, I’m ready for bed again. One of the worst symptoms I deal with when getting ready to go anywhere is sweating. CFS/Fibro make my temperature control awful, I’m either freezing or boiling and when I’m hot, I just can’t control it, I can’t cool down! It doesn’t help that usually I’m freezing in the boiling sun and boiling in the freezing cold. The looks people give me in the middle of winter when I’m walking around in a strappy summer top is a picture.

But my sweating seems to always be triggered when I’m getting ready to go out. As soon as I start picking out what I’m going to wear, the first drops start dripping off my head. I straighten my super thick, wavy hair and within minutes it’s damp and frizzy because the head from the straighteners is making me sweat worse. My make-up goes on and at this point it’s the only thing I have going for me because my hair is ruined and I can’t get dressed because I’m sweating too much. It takes about half an hour for my make-up to literally be sweated off my face. At that point I’m frustrated, and fed up so my hair gets pulled back into a pony tail and I wipe all my make up off and come to terms with the fact I am never going to look like all the other women who go out looking perfect and put together.

It’s frustrating because I used to love doing my make-up and my hair, dressing up all nice and going out with friends and now it’s a matter of making myself look as presentable as possible while internally burning up and externally sweating all the fluid out of my body. It doesn’t help that one of the side effects of my medication is excessive sweating! That couples with my CFS/Fibro temperature issues and I’m doomed.

Does anyone else have this problem? I feel like I’m the only one! If anyone else struggles with this and has any remedies or advice then please let me know! Until then, I’ll continue looking like I’ve stepped out of a sauna.

Fatigue is my stalker

Right from the moment I wake up, to the moment I go bed I’m plagued by fatigue. Some days it’s better than others but it’s always there, waiting to overwhelm me.

Today is a bad day, I woke up with my alarm but physically couldn’t get up so slept on and off all morning. I’ve been up 3 hours and I feel as if I’ve been up days and my whole body feels exhausted. I’ve managed to do the washing up and the hoovering, taken care of the cats litter tray and that’s probably all I’ll manage to do today. I feel like a failure when I compare myself to all the people who have been out at work all day, on their feet and doing job after job. I used to be that person.

I don’t know how washing up or hoovering manage to exhaust me so extremely, maybe it’s because I was exhausted before even doing the jobs but after I feel like I’ve been to the gym for an hour. I know if I went to bed now, I’d sleep the rest of the day away but I hate that. I used to be a fairly active person, and I still don’t like being stuck inside all day or having to stay in bed. I constantly feel like I need to be doing something but my body fights me on that constantly. I’ll attempt to stay awake as long as I can so it feels like I’ve actually experienced the day and not let it just pass me by. Then I’ll go to bed and not be able to sleep well because of the pain in my back and other joints. It’s a constant fight, in some ways I think fighting is what makes me so exhausted.

I don’t like that my body is constantly fighting my mind, it’s stressful and harmful to my mental health. All the things I’d like to do, the things I plan and get excited about but end up cancelling because I don’t have the strength that day, it’s disappointing and it makes me hate myself. I don’t know how to balance that argument between what my mind wants and what my body can manage.

Some months are better, I can manage two walks a week and some trips out in the car; others, I don’t have the energy or strength to leave the house at all. It doesn’t follow a pattern either, I can have two good weeks and then a month of bad ones. Maybe if it followed a routine or a pattern and I could tell how I was going to feel then I’d be able to accept it more and plan but I don’t have that ability so I just have to wake up every day and assess what my body can handle that day.

That’s why I compare my fatigue to a stalker; because it never leaves me. Some days it actively takes part in my day, others it’s just in the background waiting, but it’s always there.