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.

It’s been a while…

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.

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.

Thanks for the suggestion but I’m ignoring you…

Living with depression and anxiety for 8 years I’ve dealt with advice and suggestions from people who think they know better. You know the type I mean;

“You need to get out more”

“You just need to snap out of it and decide to be happy”

“Try and see the positives instead of the negatives”

“You need more exercise, that will make you feel better”

Since developing CFS and Fibro I’ve noticed these dreaded suggestions more and they frustrate me enormously, I don’t mind advice on how to manage my pain or deal with my fatigue but when it comes from people who have no idea what it’s like to live with my conditions, who think they know better then it offends me.

“Just go to bed earlier at night, then you won’t be so tired”

“Maybe you need to stop taking all those tablets”

“You just need to change your mindset, it’s all in your head”

“Try meditating and thinking your pain away”

It’s never ending. Recently I’ve heard a lot from people who make judgements about the medication I’m taking and say I should come off it because it’s making me worse. People who say I’m filling my body with pills and tell me I’d be better off without them. It’s frustrating because without the medication, I wouldn’t be able to get out of bed. People seem to think I enjoy shoving pills down my throat, and that I enjoy all the side effects.

I don’t take medication because I want to, I’ve tried coming off it all and it wasn’t helpful. People don’t understand why I’m taking pills when it’s all in my head but my pain is not in my head; I wish it was because then I could deal with it. Instead it’s physical and I can’t just change my mindset and get rid of it, I have to manage it with medication and that medication allows me to get up and go out, it allows me to do the small things I enjoy.

But people always think they know better and I believe everyone is entitled to their own opinion but I am offended when they think their opinion and judgement is more valid than my own.

Pain, pain, pain.

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.

How having a chronic illness makes me a great actress.

“You look well!”

“You look so much better”

“Well, you don’t look like you’re in pain”

I’ve heard all of these things several times. It always shocks me how well I can hide my illness. Invisible illnesses are hard enough, when people are constantly assuming you are healthy and well, when really you feel like hell. When I tell people I have a chronic pain condition, they always look in disbelief because all they see is a 25 year old, young, curvy woman who doesn’t look like she’s in pain. I sometimes wish my pain was physically visible so people could see just how debilitating it is.

The acting comes into practice when I’m in public, or when I’m in front of distant family and friends. I feel like acting healthy is easier than showing what I really feel because my illness is invisible and people judge and doubt when I’m honest, so instead I put on this act. I smile and act polite, I put make-up on to hide how pale and washed out I look. When I’m in pain, I grit my teeth and hold out for as long as I can.

Whenever I see distant family, they always say how much better I look or how much happier I seem and it’s both nice and disappointing. It’s nice because they are happy if they think I’m feeling good and it’s disappointing because I wish they could see through the act to what I am really feeling. I wish they could see the fatigue behind all the make-up and the pain behind my smiles. It’s just easier to pretend I’m doing better and recovering than admit I’m struggling and really wish I was back in bed.

I used to be a terrible liar, I’m an honest and genuine person so it’s baffling to think I’ve grown so good at acting healthy and like I’m recovering. I think people see what they want to see, they don’t want to believe I’m in pain and exhausted so they believe the act I put on.

People I meet who find out I have a chronic illness, prefer to just judge and doubt my illness because they don’t believe what they can’t physically see. It’s frustrating because people believe in things they can’t see all the time, they believe in love and happiness but when it comes to illness they can’t see, all they feel is doubt and suspicion.

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.

Side effects may include…

Chronic illness often brings with it a whole host of medications to try and control symptoms but what happens when these medications have more side effects than helpful qualities. I wanted to give a brief history of my experience with medications and their side effects to show how much balance is needed to find something that works better than it gives side effects.

I’ve been on anti-depressants since I was 18 years old (I’m 25 now) and a lot of them worked for a period of time and then it was like my body got used to them and stopped taking notice. For me, the worst one was Citalopram, the side effects for that medication took over any good it was doing me. It gave me disturbing dreams, which happens with a lot of anti-depressants I’ve been on but this medication made the dreams so vivid and horrible that I was struggling to sleep and I was dreading when night came around. This medication also made me feel physically ill, I was nauseous and dizzy a lot of the time.

I finally found an anti-depressant that works for me which is Venlafaxine and I’ve been taking this for a few years now and the good thing is, my mental health has improved. I don’t notice many side effects with this medication other than the excessive sweating which plagues my life. As I explained in my last post, Fibro/CFS gives me very poor temperature control so the excessive sweating which comes with this medication makes that symptom a lot worse. It came down to weighing it up and for me, my mental health is way more important than some sweating. People may stare when I go out and I’m struggling to adapt to the temperature, and I’m covered in a thick sheen of sweat but my depression is under control for now and that’s what matters to me.

For a while I took Codeine to help with the pain symptoms of Fibro/CFS and I took this for longer than I should have. To begin with, it helped numb my pain a bit and it had the benefit of helping me sleep at night. The main side effect I had with this one was addiction. After a while it stopped effecting my pain at all so I increased the dose and then I began taking it more often. It soon became a habit and I was taking it just because I felt I needed it, rather than taking it for the pain. I decided to come off of it because I didn’t like that I was relying on it.

Then came Gabapentin which was a nightmare medication for me. It was supposed to help with the Fibro pain but the side effects completely outweighed any advantage it had. The first couple of months taking it, after every dose (3 times a day) I experienced horrible dizziness and nausea and it knocked me out, all I could do was sleep which didn’t help me CFS! The worst side effect for me was the weight gain, I put on about 2 stone in a matter of months and unfortunately, even after coming off of it, I haven’t managed to lose this weight because I struggle to exercise with my pain so now I am very self conscious and I regret this medication completely.

I was recommended Pregabalin after this experience which was said to have less side effects than Gabapentin and so far, this medication seems to suit me a lot better, I haven’t noticed any side effects, apart from the fact my weight seems stuck no matter what I try to lose it.

Lastly is Tramadol which is something I never wanted to take because I’d heard horror stories and it seemed like such a strong and harmful drug. But my pain, although being more stable with the Pregabalin, was still extreme at times and I had nothing to help in those moments so Tramadol was prescribed for when my pain is at it’s worst. I’ve never had a drug effect me like Tramadol does, it helps numb my worst pain but it does give me a giddy and high feeling which I don’t enjoy and the day after taking it, I’m unconscious for most of the day because it knocks me out and my whole body feels like a noodle. At the moment, I take Tramadol sparingly, only when I can’t cope so the side effects are manageable and I can put up with them.

So there is my brief medication history. I always find it interesting how different drugs effect people differently and I welcome anyone else’s experience with side effects. To me, it comes down to weighing the advantages with the disadvantages and making some compromise.

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.