Many friends of mine have wondered what my ‘flares’ feel like, and they’re pretty hard to explain because every flare can be different to a certain degree. In this post I’m going to be discussing how my flares affect me, how they feel and how it affects my day-to-day life, and hopefully it may give some insight to not only people who know me that want to learn more, but to those of you who are undiagnosed or having flares that you can’t explain properly. Hopefully this will give a lot of people insight, and if you have a loved one coping with an illness that flares up, this will help you understand more on why we can be fine one day and feeling like death the next.
The first time I had a flare, it lasted over a month and I just thought I was getting run down, but as time went on especially with being undiagnosed they really did get worse.
I’m not an attention seeker by any means, but I was made to feel like that anytime I tried to discuss what was happening to my body, and I was always accused of being a hypochondriac and it really hurt my feelings and I felt like I couldn’t explain how I was feeling without someone rolling their eyes and saying ‘yeah but you’re too young to have anything serious going on’. Now I know I’m not going crazy, and for those of you experiencing what I have, you aren’t crazy either, and it’s good to talk openly and share your experiences. If you have the ability to share your experiences and help other people out, you are far from an attention seeker. Like I said, it’s really good to talk openly, and it can be a form of therapy for yourself too.
I know when a flare is coming on because I usually get very restless and I either have extreme insomnia or extreme fatigue, there’s never an in-between. That’s when my aches and pains start. My aches and pains aren’t your usual ‘oh I worked out too hard in the gym’, it literally does feel like your whole insides are bruised and a bus has ran over you 10 times, and that isn’t me being over dramatic, it is how it feels. Any person with a chronic illness can’t really explain their pain threshold, because we don’t really have one. For a normal person to feel what we feel during a flare they would be straight to the hospital, where-as we have to continue through days and nights with these flares and act like its a 5/10 when it’s really an 11/10 (we’re very good at hiding how we really feel).
Imagine coughing for a month straight, you’d feel all sore and achy inside your tummy wouldn’t you? Well, I can wake up and feel like that any day and there isn’t anything I can do to stop that right now, I just have to ride it out.
The worst experience of a flare in my life so far was when I was sitting through a lecture during a very bad flare, and I had to do a presentation!!! Before this I couldn’t get up and get moving, walking to the lecture felt like my legs were made out of stone and everything was fuzzy. I couldn’t sit down or lean on anything without feeling sick and sore and it was not a fun experience. Yet, many of us have to cope and keep jobs down with these problems and we’re expected to not complain. The aches and pains you get from flares are never fun, and they really do drain you of what energy you had left. I try my best to sleep the pain off, but sometimes all you can do is lye there and distract yourself as best as you possibly can.
Parts of my body have their own temperature during a flare up. I suffer with fibromyalgia as well as PoTs and CFS/ME and that causes my muscles to flare up and I have hot spots on my body. You could feel my face and it’s freezing cold, then feel my back and it’s like i’ve been in the sun for 10 hours straight. The first time I had this problem was in my first year of college and I was that bad my mum rang the NHS 111 because she thought I was going to have to be hospitalised. I couldn’t move properly, I couldn’t breathe and everywhere burned and hurt like crazy! Having your skin burn on the outside as well as the inside can make you feel flushed, sickly, and can sting.
Blood pooling is another lovely symptom that many of us PoTs sufferers have to deal with during a flare, sometimes you can be out during a normal day shopping and ‘woahhhhhh my hands have doubled in size, thats fun’ or ‘ouch my feet are suddenly burning and feel numb… oh hello blood pooling’. I don’t just suffer with blood pooling, when i’m in a bad flare my hands and feet can turn black and blue and bruise. I currently have dark blue coloured fingers in parts that look like i’ve been fighting, but it’s just what my body does. It swells and bruises. Who else can say that their body fights itself??!!
Blood pooling usually appears like your skins mottled or you have a severe blotchy rash, usually my feet and hands will burn and swell with blood pooling. It can come up in patches and sometimes I will get burning and stinging skin and it’s not uncommon for me to lose the feeling in my hands or feet when it happens.
Rashes and blisters are (in my opinion) one of the worst symptoms during a flare as they can either be super itchy or super painful, kind of like having chicken pox every other week. They spread up my legs, my fingers, my feet, my face and my scalp. I have countless scars and markings from flares just from December to now, and the most heartbreaking thing about it? The scars don’t go. Then next time I’ll have a flare… oh look, that scar is now swelling up and spreading further, brilliant. It really isn’t a nice thing to experience. I’m not 100% whether these rashes are PoTs related, fibro related, or if it’s from suspected Lupus, all I know is that they’re a massive pain in the ass and they do make you feel very insecure. I haven’t found anything that helps my rashes and blisters other than letting them breathe and making sure I don’t get too hot and sweaty because that can make them worse. That’s pretty hard for me considering I don’t have a normal body temperature, but thats where the magic of a desk fan comes in! (They’re amazing!)
Joint pain is something that I feel is extremely hard to cope with, especially when you’re trying all sorts of pain killers and none of them work. If I’m in a flare that is mainly affecting my joints where they swell, hurt and burn at the same time I can find it hard to walk. People have laughed when I’ve told them this because when I’m feeling ok, i walk ok most of the time, so you couldn’t imagine me struggling to get up the stairs, but it happens. When it affects me that badly I can’t really move out of bed, I’ll go downstairs once or twice and it’ll take me forever to do what I need to do and if I rush it, I have to deal with the possibility of my joints starting to click or even pop out of place. The fun of having hyper mobility joint syndrome!
Fluid build up is another symptom I get, usually I’ll wake up with a migraine like sensation in my head and my eye. Usually it’s the left side of my face that puffs up. My eye usually droops and swells up and my glands become very prominent in my face and neck and its hard and painful to touch. I’ve found that lying on the other side of your face relieves the tension, but I haven’t a clue on how to stop it just yet 😦 But it’s something I want to write about when I figure out what it is, why its happening and how to stop it.
The fatigue is something I suffered with before the rest of the symptoms joined the party. The fatigue is like you’ve been awake for 3 days straight, you’re hungover and also have the flu. It isn’t your normal fatigue, the fatigue you get after a long day at work, or even after running 3 miles. It’s a fatigue I can’t even begin to explain. With my conditions fatigue is a prominent symptom, but I also suffer with chronic fatigue syndrome so some days I can’t even lift my head up off the pillow I’m so exhausted and I’d have done nothing the day before. It hits you like a tonne of bricks, and all you can do is rest and sleep, and even that doesn’t help. The longest I’ve slept to date is 29 hours without waking up to go to the bathroom, drink or eat once. My parents kept coming in and out of my bedroom to check on me and I was quite literally dead to the world, I couldn’t talk properly, I couldn’t see, I felt drunk anytime I tried to focus my eyes, I was away with the fairies for a long time! If someone you love suffers like this, don’t make them get up, don’t make them feel bad for sleeping, they need it. And if you force them to get up and make them go out, they will feel 100 times worse. I’ve done it myself and I feel semi-conscious for the duration of being awake. Having chronic fatigue is also hard when you’re a hygiene freak. I usually couldn’t go a day without washing my hair or having a shower, where-as now I can go 2-3 weeks without washing my hair because taking a shower is the hardest thing when you can’t even sit yourself upright without feeling dizzy. I always feel disgusting telling people this, but it’s a common thing we go through. If you want to help us out, get us dry shampoo and baby wipes, they are god sends for when you can’t wash yourself properly. Also, I bought myself a tangle teaser brush from Asos as usually when I’m so fatigued I don’t brush or style my hair and it gets tangled and matted, tangle teasers are fantastic for getting rid of knots and it doesn’t snag at your scalp which is a major thing for me as I suffer with blisters on my scalp.
The worst thing about my flares is the fact that they’re unpredictable. I can’t plan my life out anymore, I have to take each day as it comes, and pray that I’ll be ok for longer than a few days so I can feel human again. Like I said, I’m not always in a flare, so I can go out and appear normal to people, but if I go out to a pub and get a bit tipsy you can guarantee that my flare will appear the day later. So even the majority of normal things I used to do are impossible but I try and keep a good balance to be able to do what I want and I know if its going to affect me I clear my calendar for the rest of that week to recover and that’s the way it is. I can’t go on holiday this year, I can’t go to a festival, i can’t do anything like that, but I know that the people around me will help make up for the lack of things I’m able to do right now.
Advice on helping yourself out when you’re in a flare:
(These are tips that are beneficial to me, they may work for you, they may not).
-I’m lucky enough to be able to not work or go to uni at the moment as my flares are very unpredictable and I need time to get myself better before I go back to Uni, so my first point i’m going to make is: REST.
I know rest isn’t a possibility for everyone 24/7, but rest when you can. If you’re in a flare and you get stressed out, or push yourself too hard you’ll just make yourself worse, so it’s not worth it in my opinion. Do not give a single shit what anyone is saying behind your back, if you need rest, you take all the time you have free to rest.
-Taking vitamins I find has helped me out. I don’t go a day without taking them and I do feel like they’ve helped me out more than when I didn’t take any. I take 3 different types of multi-vitamins per day. Painkillers help in a flare up, discuss options for pain relief with your doctor. It took months before my body agreed to the right drug for me, so it may take a little while before it helps and starts to kick in, but I’d be lost without my pills!
-Distract yourself. If you’re really that unwell and in pain that you can’t even get to sleep, focus your mind on something. Sometimes my brain fog is that bad with my flare up that I can’t think straight or concentrate for too long, but if you have a show that cheers you up or a certain album, stick it on. My pleasure when I’m really ill is Family Guy and the first Stone Roses album, they both take my mind off things, even if its only for a short period of time.
-Have someone to talk too/cry too. My mum and dad are angels sent from heaven I swear! They always make me feel better emotionally when I’m poorly. My mum does everything for me when I’m unwell, she cooks for me, she cleans my room, she brushes my hair, she helps me get dressed, she even takes me out for a coffee even if she knows I’ll only be able to be out for half an hour. We all need someone to share these painful experiences with, doing it alone would not be a possibility for me.
-If you’re really not feeling well, have someone sit with you. Whenever i’ve been dizzy or felt very faint I’ve rang my Grandma and she’s been straight round when everyones been at work. It makes you feel better, it takes your mind off it more having someone to talk too and if you do faint or have a fall, someones there to make sure you’re alright and you come round.
-Avoid stress at all costs. Sometimes its impossible to avoid stress in life, but everyone with a chronic illness knows that stress does seriously flare you up. Anyone that was a negative impact on my life or made me feel bad for my illness or made me feel like it was my fault *rolls eyes* was pushed behind me without a second thought last year. I couldn’t cope with the negativity and the stress. And if you’re already in a flare and someone is making you feel bad for being unwell, or kicking off at you about something so silly it really does affect you and I’ve felt its prolonged my flare up.
-Talk to others with your condition(s). Although friends and family are great to have to talk too, if they haven’t got your illness they will never fully understand. It’s nice to have someone to just let it all out too. Group pages and forums are fantastic, you can moan and moan and moan about your flare and you’ll have 20 others feeling how you feel and it makes you feel not so… alone.
-Don’t try and do tasks you know you can’t do. It kills me but I can’t play the guitar anymore because it affects my left arm too much and causes it to lock and swell up, so I know even though it’s a passion of mine, to leave it alone for now, especially when i’m not good. I also can’t hang things on my walls anymore, I used to love hanging my tapestries up and creating a wall of photos but if I lift my arms above my head for longer than a minute when i’m flaring up, I will get short of breath, possibly blank out, or go dizzy and double visioned. DONT TAKE TASKS ON THAT YOU KNOW ARE GOING TO STRAIN YOU. LISTEN TO YOUR BODY.
If you have a chronic illness, let me know what you think of my advice/tips. It’s not professional advice, it may not even help anyone else, but it’s what’s helped me and it’s how i’ve coped and felt throughout my flares. Flare ups are the devil of any chronic illness, but you can get through it. You may get depressed thinking ‘whens the next one occurring?’ or ‘will i have to cancel my lunch plans next week because i’ll be bed bound’ but try and not let it rule your life. It will push you to your limits, but when you get the right treatment, hopefully those flares will be less frequent. I can’t wait until the day I get the right treatment and my flares are less and less. But we’ve still a while to go yet.
Lots of love and hope,