Jigsaw pieces

A short while ago I attended the celebration of a birthday of one of my friends. It was nothing crazy, just drinking and bowling. I was terrified though. I knew almost all of these people through cosplay, but this would be one of the first few nights I would meet them socially, out of costume. At cons, it’s quite easy for me to talk to people, as we only meet briefly and move on. But that night I knew I would be sitting beside people, for longer than that and I started worrying about what I would talk about. A year ago, even a few months ago, this wouldn’t have bothered me. I had things going on in my life, I was finishing college, or baking for my cupcake business. But now? I feel like everything I was before I was ill has been taken away, and I’ve been left to sort out the pieces, trying to assemble a new person from the fragments.

 

I lost the life I was planning, and now I have a new one. In some ways it’s better than I could have wished for, but in others, it’s hell. I don’t want to be ‘the sick one’, the one everyone looks out for because I always need help. I want to be recognised for my merits, not known for my faults. I just don’t know what to say now when people ask “What have you been up to?” I dread that question so much, and I can hear it coming down the hallway of the conversation, footsteps thudding louder until it’s finally spoken aloud. Sometimes I say something sarcastic like “ Staying alive”, other times, I stumble, trying to think of one thing I’ve done that day, or even that week. How can I not think of one single task I completed or trip I made out? There’s usually just awkward silence, as I try to think of a way to revert the conversation back to the other person.

 

What do I label myself as when someone else asks “What do you do?” Again, the word ‘nothing’ is about the only word that springs to mind. “ I sit around all day on the internet and get tired if I walk to the shop, how about yourself?” I’m no longer a college student, and I don’t work because of fibromylagia. If I answer something that vaguely sounds like I’m just looking for work at the moment, I get a sympathetic look, as if I’m not able to get any jobs I’ve applied for, which for some unknown reasons infuriates me more! As if the business driven side of me is still in there somewhere, insulted at the thought I couldn’t get a job.

 

I did try running my own business. A small nerd themed cupcake business. The more successful it got, the sicker I became. So I had to stop that as well. It could still be part of my future, just not right now. What I would really like to be doing is more and more cosplay work. Designing, and creating costumes to wear at conventions and photoshoots. It makes me happy. Will I ever be known as a cosplayer? I don’t think I could sell myself in the necessary way to become known outside of the Irish community.

 

Illness takes so much away from all of us. I’m hoping the person left behind will be stronger next year.

 

Replying to comments..

This just a short post. There’s more coming soon but I just wanted to apologise if anyone has commented on or reblogged my posts, I love getting feedback on my rambling writings but I don’t always have the energy or the brainpower to reply at the time! I remember how excited I was when I got my first comment from a stranger. It made me realise that people do actually read my blog. I promised myself then I would treat every comment as if it were my first one again and I would reply promptly. However, some of you will know that hasn’t been the case. I see comments, and am still excited to read them, but then I feel too exhausted at the time to reply and I swear I will get back to that later and then I forget. Every single time. I’m sorry, but also hopefully things will change. I’m redoing my room at the moment, giving myself a proper desk for blogging and my energy is returning.  So, please, please keep commenting on my blog, I love getting comments and I will reply! Eventually…

Things I’d tell my Teenage Self.

I was always a quiet child, happy to play for hours on her own, or sit reading in her room about dinosaurs, dogs or…anything I could get my hands on! I was chatty with my friends in school, but one of the best behaved pupils, who always had her hand up for every question. I was so quiet adults often forgot I was there and I heard probably more than I should have, but it taught me to listen, and be still when others were talking. Other children my age didn’t always understand that, and it certainly didn’t help me as a teenager. It wasn’t always that I was shy, sometimes I just didn’t feel like talking to people. I had confidence in myself and my abilities, but I never pushed myself forward, I didn’t want to be the centre of attention. 

So what if one day when I retreated to my room for some peace, I found my 25 year old self sitting on my bed, ready to chat? Would I make the trip worthwhile, and give myself some tips about surviving my teenage years? Has enough time since then matured me enough to really know what could have been different, better even?

13. You’re starting a new school, but you’re still the same person. You had lots of friends in your primary school, so don’t be afraid that people won’t like you now. Just speak up, smile and make friends.

14. Leave your eyebrows alone.

15. Ignore those members of your family that assume because your sister gets top marks all the time, that you must be the dumb sister. The dumb sister who makes up for lack of brains by being good at art, at cooking, at geography, at history…all those classes and they still won’t accept that you too are smart. Ignore them. You won’t have the chance to prove them wrong, but you can prove yourself right.

16. Say yes to everything. This is your year to try as much as you can, both in school and outside of it. Find out what you don’t want to do with your life as much as what you would like to do. You’ll meet so many different people this year, just talk to them at least!

17. Boys. This is your first year in a mixed school. Yes they are distracting. Remember they are more nervous than you are, hard to believe, I know! You’ll have forgotten half of their names in a few years anyway so have fun with them if you want, but there is a man coming. He’ll be there when you are ready for him and he is worth the wait. A thousand times over.

18. It’s one short year, just work hard and you’ll be on your way to college, to study anything you put your mind to. Work hard, even if you don’t need the points. It feels nice to do better than people expected. Support your friends if they’re stressed by school. Don’t be as tough, both on yourself and as a person. It’s ok to just be nice and let people in sometimes. Don’t put up with crap from ‘friends’, if you don’t feel happy about seeing them, then try to avoid them. Learn to end friendships you’re done with properly, and not by hoping the other person suddenly notices you’re not friends anymore.

19. Not really teenage years anymore but for one last tip: College friends will stay with you through exams, summers and when you go abroad, make a good impression and make a few close friendships.

The most important thing’ I would tell myself for the future is

“You will be loved.”

 

It’s a building for sick people.

Hospitals are the worst places to be when you’re feeling ill. Usually when you’re in any way ‘not quite right’ all you want to do is curl up in your own comfy bed, with easy access to guilty pleasure tv shows and be left alone. Sometimes however you need some extra help and this might be from the doctors at your nearest hospital.

If you have the unfortunate need to come in through A&E, then I offer my sincerest condolences to you. Whether it’s from an accident or illness, you try your best to make yourself look presentable, you wear your best pyjamas, or you try to hide as much of the blood that is dripping from your hand/nose/general body. You register yourself at reception, trying your best to look as ill as possible, because the receptionist might just have the power to bump you up the list. Sometimes you need someone else to give your details, perhaps there’s too much blood pumping out of you to concentrate properly. Then, you turn and look at the waiting area, choosing where you want to sit as quickly as possible, while avoiding the eyes of judgment from the gallery, ‘What’s wrong with her?’ ‘ She looks awful’ ‘ She doesn’t look as bad as me.’

You sit and wait. You become one of the judges as more people file miserably in, you silently question the people sitting laughing and joking, do they really need to be here if they’re well enough to sit chatting happily?

Then the triage nurse comes out. Triage means to ‘sort’ and this is your chance to earn your place at the top of Schindler’s list. If it’s an invisible problem, you need to amplify how ill you feel with many superlative phrases, as the obvious ‘bones sticking out of limbs’ cases are usually considered more urgent. She takes your blood pressure and temperature, which you hope will show up something, just so you’re treated more quickly. You’re asked for to rate your pain between one and ten, this for me is the hardest part. I am now almost always in pain, so for me to be in A&E it is really serious, but I still hear myself saying ‘Oh it’s about a six’ at the very moment when I need to be honest and not a martyr. Whatever number you choose, this is duly noted and then the nurse makes a decision which will determine potentially the next 12 hours of your life. What colour is your case assigned to. For us in Ireland, if you’re assigned to orange, your case is serious and in need of medical attention as soon as possible. Good luck if you’re green, say goodbye to at least a night as you’re considered bottom of the priority list. The triage nurse is however permitted to administer pain relief, so at least if you’re sent back out to the dreaded waiting room, it might be more enjoyable than before.

Whether you’re brought straight through behind the green curtain of A&E, or called hours later, you quickly learn there’s no wizard waiting to fix you up and send you on your way. It’s chaos, no matter what time you enter. There’s never enough trolleys, so there’s lines of chairs as well, assigned to numbers so the doctors know how to find their patients. There’s two types of doctors, A&E doctors are the ones who pick out your file from the colour coded folders on the wall. They are your first response team, they assess you, perhaps are able to treat you if it’s something superficial like a wound. If it’s a deeper underlying problem, then they will refer you to the medical doctors. This is by no means the end of your torture. Depending on another system, the medical doctor may pop around to see you in a few hours, or the following day. You may continue to get pain relief from harried nurses walking swiftly by, but you might not see a doctor for hours. Even with that visit, you might be sent home with advice, and a prescription, or told you need to be admitted. In Ireland, there is a shortage of beds so you may well be left for a full day, on a chair and then promoted to a trolley, before finally hearing the those magic words, “We’ve found a bed for you.” This means within hours, you might get some much deprived sleep in a yet undisclosed ward somewhere in the hospital. A&E is noisy. What’s more, it’s always noisy. They may turn the lights down during the ‘night’ but nothing else stops.

At some point, you are eventually told you’re being moved to a ward, and you silently rejoice to be leaving the headache of A&E behind, when you remember that you’re still in hospital, the nightmare isn’t quite over yet.

Life has been the death of me.

I used to know a girl.

A girl with dark brown eyes and long hair. She grew up very sporty and fit, and was quick to laugh. She loved to dance. School work came easily to her and she strove to read as much as possible. She loved learning new facts and remembered them months after reading them once. She loves doing quizzes to test herself.

She was strong willed and stubborn, sometimes to her detriment. She didn’t need anyone with her to do things, sometimes she’d even prefer to do things on her own. To new people she was pleasant, although very quiet, and many never saw more than that. She didn’t often let people in, maybe one or two people at a time in her life, but she moved on swiftly. She may have collected souvenirs from travelling but she never collected friends. Most of the time she thought it was a risk to become close to someone, and never bothered with a boyfriend-it sounded like work. Trying to make someone else happy, she never recognised that maybe a boyfriend would add to her life, not restrain it.

She had a great yearning to travel, to see as much of the world as possible, and not necessarily in style. She hoped to combine her college degree with travelling the globe as part of her job. She saw being happy in life more important than earning huge money and being miserable in a stressful job. Like testing herself at quizzes, she wanted to be challenged at work, for each day to be different. She wanted to make herself proud.

Then one day this girl became ill. She had been sick before, but this time was different. It carried on for a number of months before she gave up. Too much had changed in her life, the future she wanted was unattainable now. She quietly passed away some time in early 2011.

Through counselling I was told to allow myself to grieve her death. To accept she wasn’t here any more. It was and still is so difficult not to slip back into old memories, to expect her to be there, making plans for the future. I still have some things in common with her and that makes it harder to forget her.

How can I forget her when I see her face in the mirror every day?

Age is but a number.

“How can you compare a young girl like you being sick to a old woman like me being sick?”

This is what was thrown in my face by a fellow patient two weeks ago after I told her I was unable to get up to help her with something. When she exclaimed that she wasn’t well enough to be doing on her own, I pointed out that I too, was in hospital and therefore likely to also be ill.

The reason I couldn’t, or in the old woman’s eyes ‘wouldn’t’ get up to help open my own curtains so she could watch tv from her bed, and not her chair was because I was in a full blown skin flare up. I was in agony, I could barely move my arms, let alone get up and walk about. I’ve had this skin issue on and off for nearly eight months now, and all doctors have told me is that it might be linked to either Crohns or fibromyalgia, or it might be a third condition. My entire skin was on fire and screaming to be soothed, and there I was being accused of not being that ill because of my age.

That’s another huge challenge with invisible illnesses. Yes, there’s the obvious difficulty of it being ‘invisible’ and therefore extremely complicated to explain to others, who only see a person who looks fine, and has no apparent signs of ill health. Fatigue is often seen as laziness, widespread pain is misunderstood and seen as psychosomatic, depression is ‘a choice’ and sufferers can just snap out of it. This applies to patients of any age with invisible illnesses. In fact, developing them at a later age would probably incur less poor judgment from healthy people. Unfortunately, there’s the fact that many of these illnesses can strike at any age, and will reduce even young people to hobbling around like a crippled old woman on a bad day. How does a young girl of 25 explain that she has less energy than an 80 year old woman when she looks healthy, if not a little pale. With Chronic illness, how does a young person explain that no, he can’t just get over it, it’s not a cold, it’s a lifetime companion. People just expect young people to be able to fight back quicker against illnesses, and can not comprehend how they are still sick, months after being in hospital. Just because we are discharged, doesn’t mean we’re healthy now. It just means we are ‘well’ enough to go home and suffer in silence there instead.

I read a thought provoking post during last week, Shame of Illness, where the blogger(please comment if you recognise who I’m talking about, I can’t remember!) spoke about being ashamed that she wasn’t healthy. I feel that way a lot of the time. I feel embarrassed when people ask what I do, and my reply is that I graduated last year but haven’t worked yet. I can see the thought flash across their eyes, ‘Oh, she’s on the dole’, but am rarely asked why. I just get the condescending look. I need to come up with a better answer.

Our culture places a lot of importance on working, on earning and living and contributing to society. It is seen as a marker of success, above being simply happy. It defines us to the point of being one of the first questions asked on meeting a new person. I would love to be working, to feel independent again, to boost my confidence, to have goals again, and most importantly, to prove myself to the one person I can never seem to impress; myself.

I feel embarrassed when I can’t complete simple tasks like having a shower without needing to lie down, or at least sit down for a while afterwards.

I feel embarrassed that I can’t depend on myself to be able to carry out plans like a cinema trip, because my skin might be too bad that night.

I feel embarrassed that if I do manage to accomplish my plans on one day, the next day I will be a curled up heap in my bed, too tired or stiff to move outside the house.

I feel embarrassed knowing at 25, I should be in the prime of my life, working, travelling and having fun.

I feel embarrassed when I cry from being in so much pain, it makes me feel so vulnerable and childish.

I feel embarrassed letting people down when I’m too ill to meet them.

I feel embarrassed being the youngest one in the hospital ward.

I feel embarrassed that my body doesn’t function the way it should.

My body has been through so much, and yes I’m still alive. I’m a lot better than I was in some ways for the last few years, but I could deal with Crohn’s complications more effectively than I can with this skin problem. It is completely debilitating and immobilising. With Crohn’s, I know what is happening and doctors have a fair idea of what to do with me. Not all of them, and it takes a while for them to get things right, but at least they know what to call it.

I’m 25 and can’t take care of myself the way society expects me to because my doctors don’t know how to treat my skin. This last few weeks have made me feel even worse. Nurses handing me tablets, doctors telling me what to do, dinner ladies trying to force me to eat. I know that this will pass and I’m not going to be in this situation forever. My mam has MS, but she told me last week to be proud of everything I’ve come through in the last few years. I don’t think anyone should have to go through what she does on a daily basis and tried to argue that her condition was far worse but her reply was that at least she got to live a proper life first.

I try to remember the quote “What messes us up most in life, is the idea of how things are meant to be”.

Some days I find it hard not to dwell on how I wanted things to be.

My Fibromyalgia Fable.

I’ve never posted about how I was diagnosed with Fibromyalgia. I feel very lucky compared to others, as mine was diagnosed relatively quickly, but seemingly for different reasons that I’ve read from other bloggers. Anyone else have skin problems?

Back in late February/early March I was sitting playing video games with my boyfriend when my face started to burn. My skin was hot to touch, so hot you could feel heat from a few inches away. I had no idea what was happening. It was painful but just about bearable. My boyfriend got ice cold wet towels and held them to my face while I went on playing to distract myself. The heat felt like it was moving around my face, so the towel had to be moved around as well. After a few hours it cooled down. I was so glad that it was over that I didn’t really think much about it.

A few weeks later, sitting watching tv again with my boyfriend, my arms started to burn. Then my face, then my stomach, my legs, it felt like everywhere was on fire. It was painful enough that even with dealing with Crohns/Ulcerous Colitis for most of my life, I started to cry with pain. I was scared, I had no idea what was going on. Again, eventually it passed, and I fell asleep there on my couch, exhausted from pain.

The episodes came more often over the next 6 weeks, I couldn’t find a pattern to them. There didn’t seem to be any link, any trigger I could avoid. I would wake up in the middle of the night in agony, the pain would be so bad I couldn’t bear anything to touch me. The burning sensation moved around my body like flashes, I couldn’t keep up with the ice packs.

This continued over a good few weeks, running along side trying to set up and run a small cupcake business. Even though I wasn’t really well enough for a ‘real’ job, I couldn’t stand just sitting around, doing nothing with my life. I found myself getting exhausted very easily, and my back would ache after only an hour or so of baking. I just put it down to a still weak body after being sick for so long, and I never connected any of the symptoms.

So long story very short, after several A&E nightmare visits, various stays in hospital over the summer, countless new doctors asking the same questions, I was finally diagnosed with Fibromyalgia. That explained the fibro-fog, back and muscle pain and fatigue. And the burning itching skin?

Still no answer.

The pain ” might” be related to Fibro, but no-one can explain how bad my skin gets when it happens. It looks like excema, but one of the meds I’m on for Crohns, would normally be used to treat that. So no-one knows why my skin is refusing to cooperate with normal cases.

I finally feel like enough tests are being done by the right doctor to find an answer but yet again it means I’m in hospital. During my favourite month of the year, during the lead up to my favourite day of the year, Halloween. Boo.

That’s not what I ordered.

This is what was sitting in front of me for lunch, on a hospital tray. That wasn’t what I had planned for my lunch this weekend. I had a vague dream of having something nice.

I’ll write a post about why I was admitted to hospital this week later but for now, I’m just fed up. I’m not even allowed out for the day, even though I won’t see any doctors today. Yesterday I wanted to try some live blogging, talking about my fellow patients, the food etc but today I just don’t feel like it.

Wow, that all sounds like I’m in a really bad mood but I’m just tired of what’s going on with my body. I want a break.

Forgive me, Father.

 

Forgive me, Father for I have sinned. It has been two weeks since I last blogged. 

 

Well, yeah. I missed one week and then decided not to get stressed about imaginary deadlines, and then I’ve had a terrible time lately with fibro-fog, pain and skin issues, plus extreme fatigue, which I had before but I think since I came off steroids, it’s back, making up for lost time. (Look at the length of that sentence. My English teacher would be ashamed.)

I did work out that I could use the dictation thingy(I can’t remember words. I apologise.) on my Ipad to record some of my intended blog posts, which uses up less energy than typing so hopefully there’ll be more posts to come soon. Unfortunately my Ipad doesn’t exactly understand my mumbling so I still have some editing to do!

For me, one of the worst aspects of fibromyalgia is the fibro-gof fog. See? The pain we become accustomed to. We learn to hide it if we need to, we can rest, we can take painkillers, we can try to sleep. When you’re talking to someone, you cannot hide forgetting a word. You stand there, desperately striving to recall the word, maybe you know what letter it starts with, but you cannot even make relevant sounds to help yourself. More often than not, that doesn’t even happen. You know you will not remember the word, there’s just nothing happening in your mind, you can’t even try. Sometimes the person you’re chatting to will put both of you out of misery by prompting you, but a lot of times, you are left to trail off, muttering an apology, or dismissing what you were going to say, as if it wasn’t that important anyway.

 

You ask questions you’ve just heard the answer to, making it look like you weren’t listening, when in reality you’ve just forgotten. You start to feel embarrassed speaking to new people, in case you sound stupid when you can’t remember something that should be obvious even to a child. You have to work so hard mentally to try sound ‘normal’, that it becomes too exhausting to try. So you don’t talk. You sit and listen, and nod when you feel you should. You can either listen, or talk yourself, but trouble starts when you try to do both.  

 

 

Physically it’s tiring too.  Like an action has been cancelled in Sims, you forget why you’ve walked in a room, only to walk out and remember what it was you should have been doing, or retrieving. I’ve walked through a shopping centre three or four times, because I’ve walked past shops I needed to visit, three or four times before suddenly remembering.  This exhausts you even further, exacerbating the fibro-fog more and more.  

 

I recently told this story to another blogger who had written about fibro-fog.  

 

 

I was visiting my psychiatrist two weeks ago as I am being treated for depression(before I developed fibromyalgia). At the end of the session she wrote the time and date for the next appointment on an appointment card and handed it to me. Then she asked was there anything else that I’d like to discuss with her.  I asked it is there anything I could do to help with the forgetfulness and short-term memory loss, as it has been getting worse lately. She talked for maybe 3, 4 minutes about how the brain is a muscle and can be built. She also said it’s not the case of memory loss, my body is so aware of everything else, being constantly in fight or flight mode, that remembering the right word for something is so far down the list so my brain doesn’t bother trying. (I can explain this further if you like) When she finished talking, she asked was that everything for today, and I realised I had already forgotten what date she had scheduled the next appointment for. I asked could you write it down send it in the post to me because otherwise I wouldn’t remember when it was. She  hesitated for a moment and then so she could send it in the post, but also that it’s written down on the card I was holding in my hand. All I could do at the time was laugh, and shrug as if to say, that’s  a perfect example of why I was asking about forgetfulness. I still left feeling very embarrassed though.  

 

My weapon against fibro-fog? 

 

Lists. Endless lists. Hell, even lists of lists of I need to make. 

 

I write everything down, there’s nothing that I can say, ‘Oh, I’ll remember that, I don’t need to write it down’. I wrote before about making lists and how dependent I am on them. To other people, I probably look super organised.

 

To me, there’s probably something I’ve forgotten to put on the list. 

 

 

P.S. I cannot tell you how many typing errors, incorrect spelling mistakes and complete blanks I’ve had about spelling words during the writing of this post. I couldn’t remember how to spell ‘organised’. I used to be smart, damn it.

 

I’m still alive

So I didn’t post last week. I was too exhausted by the end of the week to post anything on Friday, even just to post that I was too tired to post! It was a particularly stressful week. My cake and cupcake business had been invited to take part in an Edible Art Gallery. I said yes at the time because it sounded fun and exciting. I forgot about the stress I would be under. It just wasn’t a great week, I lost a full day to exhaustion on Monday, then the kitchen was too warm for one of the cakes to set properly, I spent three times as long as normal working out the maths of the design because of fibro-fog. Nothing seemed to go right. In the end I delivered one cake, whereas the original plan had included two. Thankfully it wasn’t for a paying customer, and thankfully the organiser was very understanding. I wanted to do the Tardis as well as a Dalek, but I only managed the Dalek as below!

 

 

 

Regular posts will resume on Friday. Unless something else happens!