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.