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.
It’s a very confusing and worrying time right now and for those of us who suffer with anxiety; it’s terrifying. One of the latest things to affect my anxiety is the use of masks in public.
I think wearing a mask is a simple selfless act, it protects others and minimises the spread of illness. I agree that the majority of people should wear a mask. But where as it’s a simple act for a majority; it can be a distressing act for a minority and I feel that this should be understood and accepted.
I walk into a shop without a mask and although I look young, physically healthy and capable to the store staff; I suffer with autonomic dysfunctional which causes me to breathe difunctionally; I hyperventilate especially in situations of anxiety. As soon as I enter I’m questioned about my lack of mask and I explain myself, feeling like an imposter. As a person with social anxiety this is deeply distressing to me and as a person with a physical invisible illness, it’s deflating having to explain my illness and prove I have an illness despite my physical appearance. But the most distressing feeling comes from moving around the store, being glared at by other customers questioning why I can get away without wearing a mask like I’m committing a selfish and malicious act when in reality I’m just trying to do my shopping without making myself ill. The looks from other people are the most hurtful act as their judgement makes me feel like a disappointment, like a criminal.
Now, I have a mask and I wear it if I go out but when my symptoms flare up then I can either remove the mask or potentially pass out in front of everyone. I make myself wear a mask because the reality is, I’m too scared to go through the experience of explaining myself. My anxiety forces me to wear a mask just to avoid the judgemental glares and questions that will no doubt drown me if I choose not to wear a mask. But I watch people like myself, with an invisible illness trying to explain themselves and although in some cases they are treated fairly, the majority of the time they are asked for proof; they are made to prove their illness to a person who has no medical training, to a person silently judging them and making them feel uncomfortable.
I don’t go out anymore. For me, wearing a mask with my POTS and dysfunctional breathing causes my heart rate to rocket, I begin to sweat profusely and hyperventilate. This leads to dizziness, vision disturbance and I begin to black out. Instead of forcing myself to wear a mask and make myself ill I stay at home and avoid going out. I avoid it because the anxiety of potentially having to prove I suffer with a life-limiting illness is so distressing to me; I can’t even consider facing it. Before Covid, I’ve had to explain my illness and prove myself but the idea of doing so, just to go outdoors now is a horrible feeling.
The point of this post is to implore people to be less judgemental and kinder to those who cannot wear a mask. Of course, there are people who abuse the exemption for selfish reasons but you can’t treat everyone as if this is what they are trying to do. There are those of us who have genuine reasons for not wearing a mask and our chronic illnesses make our lives difficult enough without judgemental remarks and questioning. It’s a worrying and unprecedented time right now and we all need to think of others and be kinder and more understanding.
Well, it’s been a while since I last posted anything. I wish I could say it was due to leading an exciting and active life but unfortunately the opposite is true. My M.E has taken charge of my life once again and I’ve been in a state of exhaustion and pain for months. As if that wasn’t enough, a whole range of new symptoms seems to creep upon me. I’ve been suffering with a very high heart rate during any activity and blacking out when walking and exercising, as well as terribly high blood pressure, sweating episodes and dizzy spells which attack me whenever I stand up or move. It’s been a hard and emotionally tough time trying to understand why my body feels I need more symptoms to cope with.
I’m lucky that I have a good GP and as soon as I mentioned my new symptoms she did some ECG tests and blood pressure monitoring which seems to point to me having POTS so I’m currently waiting to have more specialised tests with a cardiologist but due to Covid-19 this could be a long wait. Meanwhile I’m left in a limbo where I can’t go a day without feeling physically unwell and where my heart rate seems to think it’s running a marathon when I’m just walking to another room.
Lockdown has been a rather strange experience for me and I expect for anyone with a chronic illness. It seems the whole world has been confined to their homes and discovered the mental and physical consequences of isolation. Where as, those of us with chronic illnesses have just coped as we usually do being housebound and having limited outside experiences. It definitely gave my parents a new perspective on my illness. They’ve always been supportive and understanding but having experienced the isolation and confinement of lockdown has opened their eyes to the life I live being stuck indoors so much and going long stretches without seeing friends.
Hopefully something good will come out of this lockdown experience in terms of understanding chronic illness. I hope that more people will understand the loneliness and isolation we feel and be less judgemental.
I hope to return to writing regularly again. If only to vent my frustrations and discuss my worries and experiences.
This weekend was my worst for pain in a while. It always seems to hit when I really don’t want it to. I had a family day planned on Saturday and it’s an hours drive there and an hour back. Sitting in a car for that long makes me achy at the best of times but I was already in so much pain. I didn’t want to take my pain killers because they knock me out and I wanted to have a nice day with family, not be unconscious.
I pride myself on not letting my distant relatives see how badly my CFS and Fibro affects me so it was a struggle this weekend because I couldn’t hide it. I had my tens machine attached to my back to relax the muscles because my back felt like it was cramped up and tight. I’d rubbed arnica gel onto every body part to try and control the aching. I pretty much just sat and tried to be as social as I could while feeling like my whole body was betraying me.
I never believed that you could have pain everywhere but since having fibro, I’ve been proven so wrong. My fingers and toes hurt, my shoulders hurt, my legs hurt, my arms hurt, my back hurts, my head hurts…everything is painful and it feels like my body is playing some cruel joke on me.
I have an appointment with my GP tomorrow to discuss how overwhelming the fatigue and pain has been over the past couple of months, I’m having a major flare up and it’s making my life more miserable than usual. I don’t expect to be given any major help because I’m already taking all the pain killers and staying as active as I can but it feels like I have to tell the doctor how ill I’m feeling. I have so much planned for next month so I need to get control of this flare up somehow and manage it. I wish there was some magical cure, I really do.
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!
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.
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.
I don’t remember what it feels like to sleep and wake up refreshed; ready for the day. I don’t remember how it feels to walk without pain and aching in every muscle. I wish I could remember what it felt like being well. Now I wake up every morning and feel exhausted; like the 9 hour sleep I just had was nothing. I watch everyone going about their lives while I’m stuck inside, doing small bits of housework that makes me feel like I’ve run a marathon. I take pain killer after pain killer to manage the pain that covers my whole body. I can only manage to stay awake for 6 hours before I feel ill and have to go back to bed; I sleep for a couple of hours so I have the energy to get through the rest of the day.
I developed M.E after having Glandular Fever, a virus that the majority of people recover from and never think about again. All I think about is how that virus changed the whole course of my life. It’s like my body gave up in that moment and decided it was going into hibernation. I wish my body had been strong enough to fight that virus off. Now if I catch a cold or another virus my whole body crashes and I barely function, I’m overwhelmed by illness.
Every day I wake up exhausted and the fatigue follows me through the day, getting worse and worse. I can’t concentrate, my head feels like it’s filled with cotton wool most of the time. My social life doesn’t exist because after a few hours out of the house, my body begins to complain and my energy declines quickly. I zone out of conversations, get my words mixed up and forget what I was saying. People don’t understand that I’m not simply tired, I’m severely fatigued and every part of my body screams for sleep.
2 years after I was diagnosed with M.E, I got a diagnosis of Fibromyalgia. I experience pain for no reason at all, like I’m being punished internally. Every muscle aches constantly, every joint seizes up and complains when I move. I have the body of a 90 year old woman despite being 25. I struggle to undo jars and bottles, I can’t hold a kettle if it’s more than half way full. Some days I can walk into the local village and other days, I can barely make it to the end of the driveway.
Since my initial diagnosis, it’s been a turbulent journey. I’ve taken people’s judgement and felt guilty for having an illness that other people can’t physically see. I’ve been called a liar, I’ve been told it’s all in my head. I’m at a point in my life now, where I’ve come to terms with my limits. I have to listen to my own body and rest when I need to without feeling guilty or ashamed. I’m trying to manage my condition the best way I can. I’m working on getting a degree in English Language and Literature and I’m living my life the way I need to, with baby steps and a lot of support from family. I’m determined that this illness will not define who I am, it may limit me and place obstacles in my path but I am not my illness. There are days I want to give up fighting, moments of real darkness but they are not as strong as my will to live and enjoy life and I hold on to the hope that one day my body will wake up and decide to recover; so I can remember what it’s like to sleep and wake up refreshed, with energy to last the whole day.