“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” – Kahlil Gibran
Before I start this post I want to emphasise that ‘morning’ is not always ‘morning‘ for people with PoTs, or any chronic health condition. Morning could be 4pm, so bare that in mind 😉
But, this morning I did wake up at 7am. Which can be un-heard of for me, but recently I have been getting up earlier, having a nap in the afternoon and being able to stay up then to watch evening TV (obviously this doesn’t always go to plan)!
Anyway, my morning usually consists of slowly getting up out of bed, and by slowly I really do mean slowly. Rising in a morning (or afternoon) can be exceptionally difficult for PoTs sufferers as our blood pools and likes to gather at the bottom of our body. So imagine, every single time you stand up your heart-rate increases significantly and all your blood pools towards the bottom of your body, and you’ve been lay down for 10 hours. Getting out of bed is a task and a half, and that simple thing can suddenly cost you spoons.
Next is the bathroom, then heading downstairs slowly.
Still, usually hazy and feeling faint from having gotten up. Most days I will have a coffee. Some people with PoTs don’t like coffee, as it stimulates your heart and can cause further heart rate increase, palpitations, etc. Luckily, if I only have a cup or 2 I don’t get any significant palpitations, it just boosts my energy, even if it’s ever so slightly.
I prefer to try and eat at this stage, but most times it’s impossible. Recently my stomach has just felt.. blocked off? It’s weird feeling hungry but also repulsed at the thought and sight of any food.
It can take a couple of hours for me to get into the world properly. I like to watch TV, catch up on the news and check social media… nothing out of the ordinary for someone of my age. But I do have symptoms I battle in a morning, and usually in a morning it’s worse. A lot, lot worse!
Usually the symptoms that are the worst in a morning for me personally are:
-joints clicking a lot more than usual
-sore lymph nodes
The things I’ve found beneficial to do in a ‘morning’ to lessen symptoms are:
-forcing some sort of food down me, even if it’s a dry biscuit so I can take my tablets sooner rather than later so they kick in faster. If I can’t eat at all, smoothies to drink are a good idea.
-Drinking a pint of water before or just after getting out of bed.
-Drinking water after a coffee (or before)
-Try to stay awake once risen. even if you’re tired, try and stay up for an hour or two, then go back to bed. Staying in bed 24/7 isn’t a great idea for your body.
-Stretch to avoid muscle spasms.
-Avoid showering in a morning to save spoons.
If you have any tips on coping in a morning with PoTS, please comment below 🙂 Morning routines are hard with PoTs, and usually symptoms are worse when first rising. Any other suggestions are more than welcome, and if you’re reading this thinking about a loved one with PoTs, please remember that we can’t always set a time to get up and get going, sometimes we need our rest, and any extra help you can give is always greatly appreciated.
I long to accomplish a noble task, but it is my chief duty to accomplish small tasks as if they were great and noble. -Helen Keller
A disability is much more than a chair.
Yet, when we imagine a disabled person, many automatically think of someone in a wheelchair. But i’d like to know where the idea of a disabled person HAVING to be in a wheelchair came from. Disabilities are much more than a chair. It’s whats affecting the person deep inside, that nobody can see with the naked eye. So why, why must people have to defend their illness due to the fact they haven’t got a chair?
Please bare in mind, some disabilities yes, do come with wheelchairs and I respect that. Many people with my disabilities have wheelchairs, but the issue for me is, I find a large percentage of disabled people don’t necessarily own a wheelchair, and can get criticised by small minded people, usually this occurs very frequently too.
I only realised the anger and frustration that disabled people all over the world feel (about the ignorance), when I became sick myself. You’ll find thats the case with a lot of us really. The comments we can get are brutal and they stick with you, whether people like to admit it or not, it really does play on your mind. Even when talking to new people, I do explain my disability, because its a big part of my life. The words ‘you aren’t disabled’ or ‘you don’t look disabled’ are thrown about so casually. The confusion of why you deserve disability from the Government is ignorant, and the looks you can get for parking in a disabled space. My goodness! And for me, I feel like the attitude would be different if I used a wheelchair.
There’s a story behind every person that says they’re disabled. I mean, you don’t just say that. There’s a reason people are granted disability and there’s a reason I don’t use a chair.
With my conditions combined, going anywhere can be uncomfortable. You have good days, and you have bad days. But nobody can tell you the future on any of those days. Nobody can tell you, you’ll go out today feeling okay and not pass out, or you’ll go out today and not start to throw up because your BP is dropping and your heart is mimicking a panic attack, all because you’ve been stood in a line for 15 minutes. Having to think 2,3,4 times about going out incase you’re unwell is not nice, it’s not fair, but it’s what you deal with. So to be somewhere, and have someone make a comment, can set you back a LOT. All because you don’t ‘look’ disabled, or don’t fit the image. It never seems to matter how these conditions make you feel inside.
Ok, so what does disabled look like to you?
If I was to google “what does disabled mean” the first thing that comes up is this.
(of a person) having a physical or mental condition that limits their movements, senses, or activities.
“facilities for disabled people”
synonyms: having a disability, wheelchair-using, paralysed; More
relating to or specifically designed for people with a physical or mental disability.
“disabled access is available at all venues”
I’ve highlighted in bold that part of the definition given by Google is ‘wheelchair-using’. That to many, is correct. If we look closer you’ll see underlined “having a physical or mental condition that limits their movements, senses or activities.”
So, if I gave you a scenario, after you reading all this. What would you say? How would you react?
There’s no spaces within a parking lot, you drive round and round before finally finding a space. You come to the bottom floor and it’s filled with disabled spaces. “Nobody really uses them” you may think. Someone gets out and struggles at first when they get out, but then they’re walking fine, nobody gets a wheelchair out, nobody has to guide them. What do you think? How do you react?
Would you be one of those who says something loud enough for them to hear? Or do you accept that the definition, besides wheel-chair using, for a disbalitiy is “having a physical or mental condition that limits their movements, senses or activities”.
If you step back and think. That person could have had a panic attack several times before agreeing to finally get in that car with his mum and go shopping. That person could have MS and has been having physiotherapy for months to be able to get outside. Or like me, they could have numerous chronic illnesses that limit my basic abilities but I won’t use a wheelchair, as I am 20, and I want to keep my mobility.
It’s 2016, be one of those people who is kind. Who thinks before they speak.
Don’t put people in categories. Thats happening a lot this year. “All muslims are terrorists” for example, one we rarely speak about, is the attitudes towards disabled people by abled bodied people, and the attitude towards disabled people and wheelchairs.
Thank you for reading.
I never thought that at 20 years of age I’d be writing such a personal, in-depth post on dating with a disability. But then again, I’m personal, I enjoy writing and low and behold I’M DISABLED.
Dating is always going to be a tricky field to master. For anyone the daunting thought of meeting someone new, even just for a couple of drinks, can make you so nervous. Before I even knew anything was wrong with me I remember the nerves of going on a first date (bare in mind it was a walk round the park but still IT WAS A DATE).
But after splitting up with my boyfriend of then 2 and a half years due to my struggling, it made me take a massive step back. I couldn’t look after myself, let alone hold down a relationship with someone, whilst living away from home. So when I moved back I looked at myself and thought I was the issue.
I found myself (when the time came) stressing about the things you don’t usually have to think about before a first date. “what will i do if theres no seats and i faint and he doesn’t know whats going on?” “what if i suddenly flare up” “what if i throw up everywhere” “what if what if what if”. It wasn’t about what to wear, how to do my hair, it was all about how to fit around my disability without making the other person uncomfortable.
But I shouldn’t have been so quick to jump in and judge myself. People wanted to date me, I found out eventually, people found me attractive, but it hit me after a few months of going round and round… I didn’t want to date them. Maybe it was to do with being in such a long relationship and not bouncing back, maybe it was to do with the lack of energy. Or maybe, just maybe, it was time to look after myself.
For me personally, I have found that dating with a disability whilst being young has been difficult so far. People not understanding, people not grasping the idea that I look fine and I’m really not, or someone just doesn’t like the idea of ‘having to look after me’. But I don’t need to date, I don’t need a boyfriend. For me, the path is to find out how to help myself, guide myself and then someone else can be added into the picture. Or may never. I don’t know. I find that if you’re young and adapting to your situation, there’s plenty of time in the future to date, etc. But I’ve found that the people that care… really do care, and instead of dating, making friends is key for me, and for my mental state, you can’t NOT socialise.
So if you’re young, battling a disability at the moment and you’re worrying about dating.
Don’t sweat it! Theres plenty of time and I find that we battle enough ignorance and heartache without having to add on top of it 😉 But, when you find someone thats right for you, they’ll stand by you no matter what. One day we’ll all find this person. But until then, be your own hero and don’t worry too much.
I was just sat a minute ago thinking to myself really how lucky I am. GCSE results came out today and on this PoTs Facebook page I’m a part of I saw a young 19 year old girl celebrating that she had finally gotten her English GCSE and she was going to go onto her Maths next. That got me thinking. A lot of the time I am thankful for everything, but i’m also consumed by sorrow. I mean, of course, i’m always in pain, that consumes me, it’s a 50/50 whether or not i’ll wake up feeling sad or happy, anxious or lonely, but I do think a lot some days about how my illnesses consume my life.
But what I don’t ever think about is that I made it to age 19 in education, and if that isn’t something to feel happy, and lucky about now i don’t know what is.
See, this young girl was so happy that she finally got her English GCSE, when I got all of mine 4 years ago today. I’m not saying its a competition, or I’m gloating, in anyway what so ever. I just feel lucky that I was able to do that when so many others couldn’t. I got all B’s, 1 C and 1 D. I was battling then, but not even to 80% of what I battle now. So, I could manage. Then I went on to do 2 (very difficult, but manageable) years at college and got a DDM (basically AAB) in Creative Media Production. That same year I had a liiiiiittle break down, a rough patch, but I still managed to do a year at university and come out with a 2:1 overall.
So I can feel sad, I can feel miserable or lonely but there’s something I often forget. I am so lucky that this didn’t consume me younger, and i’m so lucky that there’s still hope and a lot of determination to get back to do my last 2 years at University. I may grieve and feel sad about the life I couldn’t hold onto anymore, but I did it, and I can do it again. I am lucky. I don’t think that often enough. But I am. I don’t often think about the people who couldn’t and still can’t do the things i managed to do. Those people battle the most, and there’s nothing but passion in all of them, and I praise them for that.
Myalgic Enceph-what now?
You probably haven’t heard the full name of this condition before, but you will have heard of ME/CFS… Or as it’s a lot more commonly known as… Chronic Fatigue Syndrome. It’s debatable within the scientific community that ME and CFS are the same thing. But that’s a whole other story for another day.
Chronic Fatigue Syndrome is a condition that is exactly what it tells you, prolonged fatigue. ME is thought to be the exact same disease by many, but some have challenged that, although they share a lot of the same symptoms (and most occur after or during a viral infection).
A lot of people don’t think it sounds that bad, “yeah you’re just fatigued a lot.. so is everyone else“.. some may say.. another may say “yeah I can imagine sitting at home all day, watching TV and reading books is nice isn’t it?” Looking at it from a ‘normal persons’ perspective with average knowledge on the condition, of course.
Well Ladies and Gents, that’s what I do everyday. Is it fun? No, no it is not.
What a lot of people don’t get is that being chronically fatigued is not just napping a lot and then suddenly feeling magnificent… that doesn’t happen. Being chronically fatigued means that you are fatigued all the time, no amount of sleep and rest can get rid of that awful feeling of needing to just close your eyes or lye down somewhere, it’s exhausting, especially when you’ve only been out for a couple of hours.
You may feel sickly, irritated, moody, fatigued, have cognitive problems and just feel genuinely unwell, and the longer it goes on, the longer it feels like a burden on your life, and every aspect of it.
I came across a blog post a while back on chronic fatigue syndrome (CFS/ME) and was shocked to say the least at what it had to say. One paragraph states that a study has suggested the way to make it better, in some aspects, is to just get up and have a nice walk… maybe see a shrink. That’s not good enough, i’m sorry… no i’m not sorry actually.
A lot of people with CFS/ME are completely debilitated by their condition and a lot have Fibromyalgia too (which is still in research to identify how the condition starts and affects the human body itself) so does that mean you can walk that off too?
I have a lot of other conditions and my ME/CFS was possibly caused by a glandular fever virus that is 100% not relapsing but I unfortunately caught a horrible case of it. These things don’t just magically appear, and to think that they can magically disappear is absurd.
So here i’m going to talk about the most common misconceptions about ME/CFS
1) “CFS/ME along with Fibromyalgia and PoTs usually affects young educated white females in their teens to mid 20s”
This is not one bit true. Young females have been grouped together in recent history (probs since the 90’s, maybe earlier) who have been high achieving students and suddenly became bed-bound, but they’re only a fraction of the population suffering. A study in 1999 actually proved that the highest percentage of suffers weren’t of high social status or were from a lower income background. Not necessarily all young white females, right? (Also: In 1990 there was an article that linked CFS/ME to ‘yuppies’ which are young working people… controversy! am i right???)
2) “Its a phycological disorder”
Many many people have tried to suggest this to me, it isn’t true. IT IS NOT AN EXCUSE FOR MY ILLNESS. Pro health proves this by stating: “Numerous studies have documented abnormal immune system, endocrine system, and nervous system function in patients with ME/CFS. There have been consistent findings of reduced natural killer cell (NK cell) function, which is indicative of viral infection, B-cell abnormalities associated with autoimmune disease, and elevated pro-inflammatory cytokines, associated with immune activation. In addition, there are documented abnormalities in cardiac function, endocrine deficits, and inflammation in specific areas of the brain associated with memory and cognition. None of these is consistent with a primary psychiatric diagnosis”. … So there we have it.
3) “It can get better through certain behavioural treatments”
Now this is a tricky one, because its caused a lot of controversy where I live (UK) because ME/CFS seems to be treated as a phycological disorder and for some people with ME/CFS and no other complications, it seems that they get told off doctors that going down the ‘no medication route’ is the best. I was actually told this several times myself (baring in mind I had other conditions that nobody ever looked into). For some people with very very mild CFS/ME I could honestly say, yes, try it, why not? But for most, including myself, these therapies do not work and lots of people seem to push and push them on you.
4) Anti-Depressants do nothing for CFS/ME
I can understand from one perspective that anti-depressants are a last resort. But from the other, anti-depressants can actually tackle neurological pain, help increase your dopamine levels and bring your mood up. For one doctor to say no to anti-depressants and another think they’ll help proves my point. I guess this isn’t a ‘myth’ as such, but I wanted to add it as anti-depressants have definitely helped me.
Keep this date saved on your calendar, as February the 29th is ‘Rare Disease Day’. This day is aimed at spreading awareness of diseases that aren’t very well known in society.
Tweet about it, Facebook it, even a £1 donation to your chosen rare disease charity. It’s all about raising more awareness and breaking the taboo of the subject. Talk openly, be honest, raise as much awareness as you can. Too many people feel like they can’t talk openly about their disease, or it’s seen as ‘attention seeking’ or nobody will care. Way way way too many people feel alone and feel isolated. The more awareness, the better, that’s why I’m happy being so open about my problems. Many young women end up bed bound and completely debilitated by this disease, and it’s time to stand up (without fainting *wink*) and be counted. Let’s spread the word and find a cure.
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,
Many people have said to me that I should do a post on how to cope with having a chronic illness, and how I manage throughout the bad days, and how I grasp my good days with everything I have. But, if i’m totally honest, I have zero idea how to manage anything right now, even on good days I have moments where I get unbelievably sad knowing the bad is right round the corner again, which is only natural.
But I do have tips and tricks that seem to help me out, but the sad thing about having a random rare chronic condition is that a lot of doctors have no idea what to do with you for the time being, or look very confused when you tell them the long list of what conditions you have *rolls eyes*
There are many things that will keep us going, and many things that make us fall flat on our faces again. I can’t say these tips will help you out, but I can say they’ve helped me.
Tip number 1.
If you’re in pain. If you’re sad. Depressed. Lonely. CRY. GET YOUR TISSUES and just sob!
Don’t feel bad for letting it out, after I have a good cry everything seems less heavy on my chest, some days I’ve been curled up on the floor screaming the house down i’ve been in so much pain… and that’s ok. *i’ve also found that doctors take you more seriously when you cry in front of them. But you also get an awful lot of sympathetic ‘u poor girl’ looks in the waiting area, that are totally embarrassing, but who cares?*
It feels good to cry. Just do it!
Tip number 2 –
This one is actually very important to me. When I was diagnosed with PoTs primarily, I had zero idea what it was. I wasn’t even given a leaflet because they had none in the clinic that day, I just had to undergo lots of weird tests, especially with my joints, and was kept for ages and had no idea what was even going on, I was told to do my own research for now and see my GP to be referred to a cardiologist or neurologist. Great. For a good month I was up in the air and a bit lost, and I didn’t know what spoonie even meant, or what saving your spoons are. It’s the greatest theory you can ever read if you’re chronically ill, and it makes sense, and works.
Tip number 3 – If you don’t have to work right now. Don’t.
I know that this is a controversial one. I know. But in my opinion when you’re chronically ill and flaring up every other day, you never know when you’re going to be fit enough to work, or even function properly.
Before my diagnosis I was juggling Uni and a part time waitressing job, and was always missing Uni and calling in sick to work because some days I literally could not function. Now I am much happier doing my University work from my bed, and that’s all I do. I get by on what money I have from my student loan for basics, like a coffee with a friend, or a night to the pub every so often and I make it work. I don’t really go anywhere anyway 99% of the time.
I’m lucky that I still live with my parents so bills aren’t an issue. But really, putting yourself first is key. Being a spoonie for some people, like myself, is a full time occupation. It’s a disability, and it’s debilitating enough without the extra stress. I’m so much happier, and I have a better mind set for getting better, because when I’m ill, I have all the time in the world to rest, sleep and take my medication, and that’s exactly what I need right now. I don’t need to worry about hospital appointments, if I ever need to stay in, if my medications making me drowsy, etc. If not working at all isn’t an option for you, maybe part time is, or cutting down your hours, because it is true, the more stress we’re under, the worse our flare ups are. But I know that life is always going to be waiting for me. It’s not going anywhere. Take the time you need 🙂
Tip number 4- Join an online community.
Honestly I never thought I would feel so happy to come across another 13,000 people on Facebook who are all in the same boat as me. I mean, I wouldn’t wish this illness on my worst enemy, but it’s always so nice and so comforting to know that some out there gets it. Not only that – they can help you through it, because they get it! Any weird symptoms you post – there’s at least 50 others who are experiencing them, and at least 5 who know how to deal with it or what it is. They’ll help you through any tests your having, again, the majority have had that specific test, and can tell you what to expect. It’s an amazing community to be a part of. All you need to do is type in your illness and there will be a string of support groups available to you.
Tip 5 – Try your best to not be sarcastic on your bad days.
I’ve done this a lot. ‘I understand how you feel Jess’ ‘DO YOU? DO YOU REALLY?’
It just creates awkward tension. I’m not saying you can’t be angry or feel any sort of emotion like that, but what I am saying is that when someone is genuinely trying to help, don’t get too annoyed with them. It’s only natural, but try and cut those responses to a minimum. It doesn’t help them, and it certainly doesn’t help you.
Tip 6 – Be silent when you don’t know how you feel. You don’t always need to be reassuring everyone else around you that you’re coping and you’re ok.
Being away with your own thoughts can be the most beautiful thing in the world. The world is filled with chaos and people who talk way too much on a day to day basis. A lot of the time we wake up feeling the same emotions we have felt for the last 3 weeks, it’s ok to not talk and want your own space and your own private thinking time. I do it an awful lot, and it really does help me out. I love to just lye in bed and think, it can be for hours, or even just 20 minutes, but it helps me make sense of everything thats going on around me, and it helps me get my head around things. Some times when you feel so much pain, you don’t know what to do with it, just lying down and thinking… it can be so peaceful. And so rewarding.
Tip 7 – Don’t worry your little head too much if things aren’t going your way/how you planned them.
The world’s always going to be waiting for you. So is that one person.
Try and not feel lonely. I know… easier said than done. but you have to firmly believe that with everything thats being thrown at you – one day, you’ll have it together. I worried last year about everything, I felt so many different emotions all in one because I didn’t have control of what was going on around me, and it sent me a little insane. Just go with the flow, right now expectation vs reality will be extremely far apart. It doesn’t mean it always will be does it?