“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
Today’s post is going to be re-visiting one of my last posts ‘Chronic Life and Social Life’ but more from a ‘house/bed/hospital bound’ perspective. I’m not strictly house-bound. But the majority of my days I find myself in bed, in the living room, or.. in my room but not actually ‘in’ bed. Sometimes hospital, but thats usually for appointments. I rarely do much else. So this post is really more… how to not go insane when the majority of your social interactions face-to-face are with your parents, S/O or pet.
FACEBOOK SOCIAL MEDIA
Everyone has their individual opinions on social media. Yeah it can be tough being a teenager or young adult without adding social media into the mix and the ability of a whole new type of bullying just a few clicks away. So I can understand why people are hesitant about it. But it’s not all bad. Since being sick I’ve found myself looking at the internet in a whole new light. Not only are there countless social media pages, private pages to do with your illness(s) and sites on my conditions ran by other people with my conditions, and all the members.. have my conditions. (How many times did I say conditions then, god damn)
Twitter, Facebook, Pinterest, Tumblr, Instagram… you will find a wide range of people across the Globe just like yourself and it can feel less lonely when you’re always looking at the same four god damn walls. Not only that, but boy it’s easy to connect with friends and let them know how I’m doing (when I have the energy, considering the energy it can take to type I dread to think about being chronically ill when the only form of communication other than face-to-face was a written letter). I also get to update my blog (when I can) and have people contact me that usually wouldn’t, and people who read my words from all around the world. Couldn’t do that without social media could I? It has its perks.
Now you know you’re either a) chronically ill b) a book worm or c) both when you manage to complete a book in less than 24 hours!
For me, books are a way of getting outside of my four walls, not into the outdoors, but into another world. I started to download books onto my iPad but realised this wasn’t a great option when you suffer with light-sensitivity , so a good old fashioned book of whatever genre you please is always a fantastic option if you can’t go outdoors. (P.S Amazon has a GREAT collection, if you aren’t into reading so much you can purchase some really unique books from ASOS Or Urban Outfitters that can range from adult colouring books to Yoga Books to Mindfulness books where you keep your thoughts and it doesn’t feel so much like a diary).
Gaming can come in a few different forms, it doesn’t have to be online video gaming shooting people like most imagine. There’s a) Board Games b) Computer Games/Xbox/PS/etc..
Now I’m 20, I rarely play board-games. I was desperate to get my hands on Monopoly after being re-inspired at my friends one night when they got 8 of us to fully participate in the Xbox version for houuuuurs and everyone LOVED IT! So I wanted to re-visit the classic, obviously the physical version, and re-live a bit of my childhood.
But on the other hand I do love video games. I’m not really into XBOX or PS2/3/4 or however many versions they have to date. I love games on my iPad, especially strategy games. I love my Mac and I love that I have Origin and The Sims 4 on demand too. There’s nothing like getting out of your own head for a while and focusing on something else, or in the case of The Sims, become a Professional Chef, get married, watch your kids grow and start a new generation within a couple hours. Neat!
*Don’t play any video game when you have a head-ache/migraine coming on and thank me later*
This isn’t something I get to do a lot because I get zapped of energy pretty easy. But there’s nothing better than getting a good cook book and reading through it. I like to circle recipes I am really determined to make and get round to them when I can. For me, it’s just the idea of having something inspiring to look forward to doing.
My latest cook book has been Deliciously Ella, and the author, Ella also has PoTs.
She has claimed to have relieved many symptoms by changing her diet, so I’m on the road to this challenge, although it can be difficult when it comes to fresh, clean eating. The recipes are supposed to be easy to make, and don’t get me wrong, a lot of the ones I’ve tried are, but some do take preparation time that I simply don’t have. But who knows? I may start gradually getting energy back through this healthy eating and can tackle some ‘tougher’ dishes that take a little longer to make. But it’s all progress! Plus, it’s fun!
Her breakfast and smoothie sections are worth checking out, as i’ve found these are the simplest to make and prepare and breakfast is always my toughest meal of the day. I find smoothies can also be a good substitute for when you just feel that sluggish that you can’t bare to eat.
These are, again, just some ideas that i’ve gathered myself. I’m sorry if you’ve got to the end of this like… well i’ve done all these things! Because I’ve done that myself! I’ve googled things to do if you’re sick and house bound and a lot of the same things come up again and again, so I tried to just think of things I do myself. Sometimes it helps my boredom and sometimes it simply doesn’t. Having a chronic illness is about taking everything one step at a time, day by day. Just because you read an awesome book 2 nights ago doesn’t necessarily mean that you want to read another one tonight.
It also won’t be easy to keep in touch with everyone, this is a sad fact I’ve faced. Simply because everyone else is busy with their lives and don’t always think to check up on you. But the ones that really do care and matter, will. I know, cliche, totally. But it is true.
Like I said though, it’s the 21st century, it’s easier than ever to keep in touch! Social Media, again, has helped me out more than I could ever credit it for.
Take it all in your stride.
If you have any suggestions to add to this list, anything I haven’t covered or maybe haven’t tried before, please comment below. I’d love to read what you all do to keep yourself sane 😉
When you’re chronically ill, it can be hard to keep up a ‘normal persons’ social life, no matter what age you are. From being 18 I struggled with my social life, and I do believe that trying to run with it when I couldn’t even walk, made my illnesses a lot worse and a lot more of a burden to get myself out of. So this post is going to be targeted at having a chronic illness and balancing a social life as best as possible.
Now I don’t know what other countries are like for alcohol, but I’m from the UK and as soon as you turn 18 you’re legally allowed to do everything an adult can, which includes drinking alcohol. This usually times very well with 17 year olds prepping for University, by the time they get there, they’ll be of the legal drinking age and the idea of ‘Freshers week’ in the UK is to get drunk and make friends, basically. So naturally like everyone else, I did this, and because I had no idea of my limitations at that point, I kept up with everyone else, and wondered if everyone else actually felt like I did the day after socialising and drinking. Even going to the Freshers Fair’s worn me down, and I put it down to me not having a good alcohol tolerance, and presumed thats why I felt so bad the days after.
But within 2 months of living in halls, I picked up every illness and infection known to man, yet everyone else seemed to shake theirs off within a week or so, mine was continuous. This is a prime example of me running myself into the ground before I even knew what was happening with my body.
Now I know, I look back at those moments and shake me head, because I know I could handle them better now. But it would still be a struggle. Just from research the first thing I found out is a lot of people who suffer with PoTs, also have alcohol intolerance. So that is one thing I moderate or cut out completely during social situations, as I can guarantee that will do a lot more harm than good, and seriously dehydrate yourself.
The next is multi-vitamins. I never used to bother with multi-vitamins until 12 months ago, and i can tell the difference completely. In the winter, especially if you’re chronically ill and are going to be at an event, or out with friends, the best thing to take per day are multi-vitamins and cod-liver oil tablets for your joints (if they’re an issue.. which I’m guessing they are for MOST of us, right??) You can even get them on prescription if you can’t afford to pay. Along with your daily medication, these need to be added to your list. I am so happy my doctor suggested them now and I wouldn’t go a day without taking them.
Another that gives me more comfort than anything is my spoons bracelet purchased from Spoonie Survival Kits on Etsy. This is just something I use as a good luck charm, something I can look at when I’m out and about and realise what it is i’m fighting everyday and I know I’m worth the fight. I also show it to friends and people I’m out with, and it creates a good conversation about how I manage and it gives them an insight in what I deal with and how they can help me. The spoonie survival kits they make are also a great pick me up. I’ve only ever purchased one, that was last month, and they come with so many nice goodies perfect for someone who has a chronic illness.
While on the subject of friends, the best thing anyone can do is to surround themselves with people who actually care and understand. The worst thing anyone with a chronic illness can do is be out with someone who makes them feel like an ‘invalid’ or like it isn’t as bad as what it is. You need to surround yourself with people who will go home with you when you say you need to go, or at least walk you to your car. I don’t think I’d be able to go to social events if it wasn’t for the friends I have that understand and don’t make me feel like I have to make an excuse for my health that day. They’re also the ones who know what to do if i’m in severe pain or pass out.
These are just a few little things I find help my social life whilst suffering with a chronic illness. Are there any things I missed off?
Thank you for reading.
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.