The lady with the magic hands

When I was first diagnosed with chronic pain/fibromyalgia, one of the first things my specialist suggested was to go to physio. I could either be on the waiting list for the NHS for god knows how many months or see if I could go private. Which I did.

Honestly I had no idea on what to expect. I had an 'initial meeting' with the physiotherapist just a day after calling them and I have to say, I was ridiculously excited. I couldn't find much information on what I could expect from a fibronyalgia perspective so the day leading up to it was full of wondering: are they going to make me exercise? Is it going to hurt? Is the person doing it going to be clued up on the needs of a fibro patient (because let’s face it, what medical professional actually understands chronic pain...)

The day started off with an early start, which my body didn’t like at all. I hadn’t taken my strong painkillers either. So at least the physiotherapist could have a true representation of how my body actually is on the day to day, flares and all.

When I was invited into the room with the most wonderful lady you could meet at Jamie Bell Physiotherapy, she sat me down and explained what we were going to do: go through my medical history, talk about a few options and discuss what I could do for myself at home as well as coming to see her. We went through my fibro in most detail. What relaxed me was how she has a number of patients that suffer with the same condition and she seemed to have a great understanding of the illness and added 'every fibromyalgia patient I’ve met suffer in different ways and what treatment I do for one may not work for another. We just need to find what works for you'.

The thing with finding something to manage your pain is that it takes a lot of trial and error. It’s incredibly frustrating and long winded to find what suits your body. But by golly, once you’ve found it, it’s like you’ve struck gold.

Once we went through everything we could talk about, she laid me on the bed... thing. She warned me that with the nature of my illness, what she was going to do is going to be extremely painful but hopefully give me relief after. She started with the nerves in my lower back (she used the technical terms and the correct names for what she was doing while she did it but I have to say, I was a bit too distracted by the pain to take note) . And yes, she wasn’t playing down how painful it was going to be. It was excruciating. Though through everything she did, she reminded me 'when it gets too much, tell me to stop'.

Safe to say it hurt like hell but after a short while after, my body was loose and it felt as though pain was flowing past the areas it would usually stick to and just left my body, not entirely but much better than I’ve felt in a long time. So that’s the day I met the lady with the magic hands, and I get to see her every week, it’s all very exciting.  

The Mermaid Life

From being a little girl, my mother used to refer to me as ‘the little mermaid’ and she still does to this day. It fits in to my love of Disney, but mainly originates from the amount of time I spend in water. My baths range from a half hour, to beyond 4 hours. If I go on
holiday and there’s a pool, it’s guaranteed that I’m in it. If I have a choice of exercise, it would be in the local pool. Why? The only place I’m not in pain is in the water. It’s soothing. It’s probably the only place that I’m completely content.

Some people must be wondering how on earth I manage to spend that amount of time in the bath tub, my brother asks me frequently, and it’s basically due to the relief I feel from the water mixed with having the Netflix app on my phone. I will sit and watch episodes of my favourite TV shows, films, YouTube videos and scroll through Tumblr for hours on end while I soak.

But what makes the best bath? I have a list of things. It starts off with turning on the tap. As I’m incredibly sensitive to changing temperatures (as my fibro friends will relate with), my first tip is to get in the bath while it’s running. This is to get your body used to the temperature slowly as the bath runs, and you can adjust the taps as you need. My other suggestion is to start off with a cool bath, and heat it up once you’re in – this may mean letting some water out, topping up, letting water out, topping up (which working for a water company, I shouldn’t advise) but NEVER just get into a super-hot bath unless you fancy your body tingling horribly and having to hop out.

My next tip is to use essential oils. I use a few in my bath that just seem to help with my aching; they open up the sinuses and do a whole world of good. Essential oils are made up of minute molecules that are very easily absorbed through the skin. The components of essential oils, once absorbed, interact with bodily systems and, depending on the essential oil, can stimulate the immune system, aid cell growth, help eliminate toxins,
kill bacteria and viruses, and so on. The ones I currently have on the go are Black Pepper and Juniper. Neither smell like you would expect, they have a lovely, almost sweet, kind of smell to them. I often use them both together (three drops of each mixed with milk) in the bath and can highly recommend both for a soothing muscle relaxing bath. More often than not, I will pick there up from Holland&Barrett (every time I’ve been it’s been a 2 for 1 sale on them too which is nice). Keep in mind that to use essential oils in the bath, you will have to mix them with something first. Personally I use a tablespoon of milk per 6 drops of essential oils, though you can buy carrier oil or use any seed based oils (rape seed oil for example) to mix them with. This is a must as if you put the oil in the water on its own, the oil will just create a layer on top of the bath and potentially irritate or burn the skin as the water heats it up; adding in the milk (or carrier oil/seed based oil) means the essential oils will mix in with the bath water.

My next MUST HAVE to make bath time all that more enjoyable is some kind of bath bomb. The obvious for this is Lush. If you follow my Instagram you will see photo upon photo of different bath bombs and what they do to your water. My top picks would have to be The Experimenter which smells quite spicy (not like curry spice, but like...Christmas spice) but then settles to something more mellow...like vanilla-ey. Phoenix Rising is another favourite, the colours are beautiful and makes your water super silky soft, resulting in your skin feeling amazing. As a general rule, though, if you mix any bath bomb with the Sunnyside Bubble Bar, (you’re just going to be bathing in pure ungodly beautifulness with sparkles and glorious water (don’t forget the glitter, the glitter is da bomb ;])

I could go into bubble baths but there is so many brads, and smells, and types of bubble bath that I fear I would never reach the end of this post. So really my tips are: get in the bath while it’s still running, or at least warm the bath up gradually; essential oils are fabulous; bath bombs are magical. Happy bathing! 

You are you, that's truer than true

When you look in the mirror, what do you see? I can tell you what I see. I see a body, as real as it can be. I see two arms, two legs, facial features and everything in between. I assume that’s what people see of me as it’s what I see of other people. From the outside, looking completely healthy has its disadvantages and its advantages.

You know what? I’m not even going to go into the disadvantages of people not being able to see you’re ill because those of you that suffer know all too well what the struggles and stigmatised issues there are with invisible illnesses. So no. I’m going to focus on the positives.
The best one for me is people treat me the exact same as they would anyone else. For me, that’s fantastic! They see Carys. Nothing more, nothing less. Though I’m sure that people who know me better than a first impression may see me as more: caring girlfriend, trusted friend, untidy daughter, girl that dies her hair a lot, the arse that complains when it’s hot outside, that sort of thing. But even so, they still see Carys.

Don’t get me wrong. I definitely have those days where I feel like utter crap and just feel sorry for myself, and want others to feel sorry for me and take it easy on me that day. I want them to know EXACTLY how I feel so they can just leave me be, or (gently) throw chocolate, painkillers and hot water bottles at me. But in a strange kind of way, I’m also glad that that is not how it is. I still have targets in my life, and if everyone, including myself, took it easy on me every time then I don’t think I’d be as strong willed and motivated as I am today.

I don’t want people to give me what I want because they feel sorry for me; I want to earn what I achieve and feel like I really did accomplish something). I don’t want people to worry about me 24/7. I don’t want to be out with a friend and them instantly freak out for me when they see a flight of stairs. As I’ve said before, it’s incredibly lovely for people to be aware of things that may be challenging and have an understanding of my capability; that really does warm my heart and make me all smushy with ‘AWWH YOU DO CARE! YOU ARE A WONDERFUL HUMAN BEING’. As I heard once ‘you’ve made it through all of your worst days so far, so you’re doing great’, so a set of stairs will not be the end of me – worst case, I’ll find an elevator or a very strong person to fireman lift me (now wouldn’t that be a picture).

In a roundabout way, what I’m actually trying to say is understand who you are. Look at yourself as a person and not a patient. You are not your illness; you are strong, you are a person and you are you.

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” – Dr Seuss 

Coping.

We all find our favourite way of coping. Strangely, I do quite frequently have the 'WHAT'S YOUR FAVOURITE MEDS' discussions as though we're talking about our taste in food, or cars or music. I believe the basic principle behind that topic is 'tell me how you cope, what works for you, cause maybe I could try it'. I definitely have my favourite coping mechanism, though it's not prescribed and I often forget about it and go too long without it.

It's going to sound corny and a little pretentious, but my favourite way of coping is surrounding myself with brilliant people. There’s nothing I love more than being around people who makes me feel loved, cared for and important. And that's generally how people in general work. We feed off of that energy people give us because it feels good. Who wouldn't want to feel good?

It’s so easy to isolate yourself when you feel down. I do, I'll hold my hands up to it. I can't even count the amount of times I've felt alone and worthless when I could have just picked up the phone or knocked on a door. I often get overwhelmed with how alone I feel which results in anxiety of dealing with everything alone. I tend not to reach out when my mental state is pretty low for the feeling of burdening those around me, or being an annoyance and even the terrifying paranoia that if I did reach out, that they'd turn away.

It takes a few different occasions to remind myself that the people in my life are pretty darn great. I felt better than I had in a long time from just having a group of friends sat in my living room, playing card games, eating pizza and watching scary movies on a Monday night. Each person there I care for tremendously. I know a lot about them and why should I be surprised that they know me so well too. Each person actually took the time when they were alone with me at different point in the night to ask me how things were, talk about life at the moment and just how things are. I've never felt so special.

But it's not just that one night. I have the girl I met at uni who takes me for pots of tea and talks to me into the late hours of the night about anything I could possibly think of and is now so special to me (if only she didn't get snapped up in marriage so soon, darn ;]). I have the guy who will come over to my home just to make me cookie dough and watch shit films just so I'm not lonely. I have friend upon friend who will pick up with me where we left off when they hear a song that reminded them of a time we had - that's the best thing about my friends. We're so low maintenance; we have that mutual understanding that we don't have to talk every day to know we're there.

You know, I'm pretty pound of myself for my choices of company. I did well, though I can't take the credit for them being the best people you'll meet.

I will still feel alone and I will still feel down and heck, I'll have days so low I won't open the curtains. But regardless of all that, I know that the people who support me would be there if I only reached out. People aren't mind readers, and sometimes you just have to ask. That’s my advice, ask. Ask for help. Ask for company. Message them first, don't wait if you want to talk.

My coping mechanism is my support system. Even in the bleakest times you have to remember that there are people out there that love you that care for you, that would hate to see you suffer alone. You’re not alone.

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And as a side note, if my friends read this. Thank you. For everything. I don't take the time I should to let you know how much I appreciate you, how much I love you and how great my life is for you being in it. After all, I'm still here today for those of you who took the time and a chance on me. I'm amazed at how strong you are, how much care you have and how bloody brilliant every one of you are. I just hope if you ever feel alone, you'll remember that I'm there, at any time. 

Not What The Doctor Ordered

People will be aware, either through experience or just general common sense, that a doctor will prescribe you medication, advise you on therapies and give you general best practice information to help day to day life. For illnesses like fibromyalgia, and many many more, the cause and triggers are unidentified. 'We know it's there but we don't know why' was the explanation my specialists often used. So in these cases you cannot treat the disease it's self but manage the symptoms. For example, the umbrella term that describes your illness may have a symptom of pain, so you'd take measures to combat pain (pain medication, injections ect), or tiredness (sleep is usually the go to). But you often get many other suggestions.

I cannot in any way say that I'm perfect in looking after myself. I don't believe anyone can. I often don't do myself any favours in fact. There's a lot I should do, but there's also a lot I shouldn't.  Should I drink alcohol? No, probably not. Do I drink alcohol? Of course! Albeit not often and rarely in large quantities. Should I get tattoos? Definitely not. Do I?  I have 4. When my immunologist saw them, he almost had a fit! He started with the speech of how I could have caused ridiculous complications and have had horrendous side effects, but not long after halted to the realisation that it wouldn't have stopped me. Yes it could have been a stupid move on my part (not probably, it was) but they went fine (they took longer to heal than they typically should and they still can be raised to the touch but they're pretty).

I wouldn't call it a rebellion; I'd call it me just being an arse. When people tell me I can't do something, I either don't even try or do the opposite. A lot of doctors orders I often take as polite suggestions. Serious things like medication, therapy and general life changers, I of course take those on board, they are the professional after all. But others, not so much.

The way I see it is if I did everything that was in my body's best interest then I wouldn't have a life. I wouldn't enjoy my meals, or go out with friends. I wouldn't have the experiences I have had if I played it safe. My worst thing I do is overdoing it. I'm supposed to be aware of my limitations, take it easy and not burn myself out. I was warned before I started university by multiple people that I'd taken too much on. 'I think you should either study or work. Both will be hard. I don't think you can do it'. I proved them wrong, so far. I'm in my second year. And it's difficult, I’m not going to lie. Though I'm so happy I did.

I take advantage of my good days. I run up stairs and skip down corridors. I push the gym a bit harder too. I just happen to forget that the more I do on a good day, the longer or worse my flare ups will be the following days. Take Disney Land for example. I wanted to go. I was adamant I was going to do everything I wanted to do in one long weekend. That meant walking all day, every day (running in some cases when I saw characters walking around). I knew even before I did it that my body will have to pay for that one.And it did. For about 9 days post trip. But god was it worth it.

Yes, I have limits. Yes I need to be careful. But is that going to control my life? Is it hell. If my body is going to give me hell for enjoying myself, I say bring it! My advice to anyone though, is if you are going to pay for your great experiences with awful flare ups, make sure the experience is worthwhile, make it count, do what you love and never look back.

As always, I'm always here for anyone who needs the support. 

A Brother, Two Cats and Several Invisible Illnesses

My Name is Carys. I’m a 20 year old female living in the centre of the United Kingdom. I have a brother, two cats and several incurable illnesses ; All three are related, they’re just things that happen to be a part of my life. All present, all annoying, but all make up part of who I am.

I’ve become less angry as I’ve grown older, but more so in other areas. It’s tricky to describe really. In general, I have good days and I have down days – don’t we all. But I can separate mine into good mental days, good cognitive days and good body days; I think the mental days are the easiest to relate to. I’m in constant battle with myself. On one hand, I have the understanding that I’m sick, that’s how it is,  there’s just some things I cannot do and I need to be kind to myself. ‘HEALTH COMES FIRST’ my managers, lectures and any other reasonable person in my life continue to tell me. On the other hand, my mind is dark. I envy those around me for what they can achieve and I cannot, I look at myself in disgust and often question my existence: ‘I can remember lyrics to the horrible song on the radio but cannot remember what you asked me two seconds ago’; ‘I can’t climb the flight of stairs in my home without wanting to cry in pain half way up’; ‘why would people even want to invite me along, I can barely go 5 feet without a break’.

I have fibromyalgia; I think that’s my main issue, maybe. Or maybe it’s a mixture of every new diagnosis a doctor will throw in my direction. I have an underactive thyroid, the wall of my bladder is breaking down, I have multiple mental illnesses which include extreme depression and anxiety. My immune system attacks its self and my body, that in its self means painful swelling (internally and externally) and a chance of my airways closing; the treatment for that however is to break down my immune system so I’m constantly sick, but hey, at least I’m not attacking myself. From the top of my head, I think that’s the bulk of it. Nothing you can see though. So what do you do when people disregard your invisible illness(es)? What do you do when they don’t believe you?

I live a normal life. Granted, my health feels worse the older I get, but that’s manageable. My mind isn’t what it was, my legs don’t work like they used to and my pain threshold has increased tenfold with being in all-over-body-pain 24/7…I take pills like they’re going out of fashion. But other than that, I’m normal as they come.

I have a job, barely. I study at university, barely. I maintain healthy relationships, barely. Barely because I manage, but I struggle.  My performance at work is very dependent on how my body is feeling that day. I have to keep an above 80% attendance to stay at University, I just about manage (if I want to drug myself to the high heavens for early morning lectures) .Relationships though, they’re the biggy. I’ve grown to learn that the people in my life should be selected carefully. Some people just don’t understand, some people don’t have the patience you need and some…some are just arseholes. Most people know there’s something wrong with me, fewer know what’s actually wrong with me and even less actually bothered to understand what’s wrong with me. Those few that try to understand are my support system, they’re the ones that remind me to take it easy, that I’m not going insane and that ‘you’re not shit, that’s just a symptom flaring up’. But on reverse, I know that some of those people try hold back how they’re feeling or issues they’re having to try not offend me: ‘I want to say I’m tired but I can’t really say that to you, you’re exhausted ‘or ‘jeeze I’m in pain…but you go through this every day so I shouldn’t complain’. I hate that. I know they mean well, and I appreciate the kind thoughts. But what kind of friend am I if I can’t listen to how you’re feeling today. Please, complain at me: tell me you’re knackered, tell me you worked too hard at the gym yesterday and you need to rest. Before anything else, I am your friend.  Trust me.

So yea. I’m Carys. I’m a 20 year old girl from the middle of the UK, I have a brother, two cats and several invisible illnesses. But I also have hope, strength and friendship. Talk to me when you need.