Want to contact me?

Since starting my blog I have had a few people asking me questions or leaving me messages which have been so amazing and inspiring. 

Therefore I have decided to set up an email and Twitter account for people to contact me.

For any private messages or questions you would like to ask me relating to Fibromyalgia, please email me on:

sareycfibro@gmail.com 

Or follow and tweet me on Twitter:

@SareyCFibro

I am hoping my Twitter page will be a place to communicate with people that follow and read my blog and to start a place where I can meet other sufferers of Fibromyalgia.

I am also thinking of starting a Facebook page, so that might be coming soon!

Why I dress like a boy...

I was looking through my blog posts and they are all mainly writing, so this time I wanted to try and incorporate some pictures...

I have often thought to myself when I look in the mirror that I am dressed like a boy. Don't get me wrong, I am a girly, girl. I love make up, getting dressed up and having my hair down and curly. 

HOWEVER

I would praise anyone with Fibromyalgia that can make an effort like some normal girls do every single day!

I would love to get up and put all my favorite make up on, and have my hair down and straighten/curl it and wear my favorite clothes everyday, but quite frankly I prefer my sleep.

If you have Fibromyalgia you will understand how exhausting it is and how important sleep is. So for me an extra hour in bed in the morning before work will always win over getting up and making myself look nice.

Most girls would love long, thick hair and I am very lucky that I do have long, thick hair.

HOWEVER

When washing, drying and styling your hair can leave you in agony having long, thick hair is a nightmare!

I never want to wash my hair because I know my arms will be throbbing in pain afterwards. So I try to wash my hair as little as possible, one/twice a week. Quite often my mum has to wash and dry it for me because I don't have the energy or I'm already in too much pain.

This means I have my hair tied up every single day. Some girls probably think 'why does she always have her hair tied up?' but it's because I'd rather stay in bed longer in the morning and it hurts my arms too much to do anything with it. 

I even cut it short into a bob when I was 17 to see if that helped but that was harder as I couldn't just tie it up so I had to style it every morning. Luckily it's grown back now and is just as long as it used to be. 

If you have Fibromyalgia and could tame this hair every morning, I would give you a medal.

If you have any quick and easy hair styling tips, they would be very much appreciated!

Most girls wear gorgeous clothes that are the latest trends from the high street shops as their everyday wardrobe. 

HOWEVER

The one word to sum up my everyday style is comfort!

I live in hoodies, tracksuit bottoms, chinos, jeans, trainers/pumps/high-tops and generally baggy, comfy clothes. 

This is where I dress like a boy. 

Me and my boyfriend often laugh as we end up dressing similar. But I would much rather wear nice comfy clothes than be uncomfortable in the latest trends and fashionable clothes.

As I am in so much pain and ache so much everyday, I get very agitated. If my legs are aching the last thing I want to wear is jeans. If I am in a lot of pain I also get very hot and flustered, this means wearing anything tight would just stress me out and make me worse. This is why I wear baggy tops and hoodies. Walking any distance can leave me exhausted and in agony so wearing comfortable shoes is one of the most important things for me. My favorite is high tops, they are padded and cushioned so they are comfy and warm. Plus they go up your ankle and give me that extra support. 

It doesn't help that I have a HUGE love for trainers, pumps and high-tops.

I would much prefer to spend £60 on a pair of trainers I'd wear everyday than a pair of heels I'd wear every now and again to go out. 

These are the latest on my 'wish-list'!

I am very lucky as I have an amazing boyfriend that doesn't care what I wear as long as I'm happy. Don't know how he puts up with me when I turn up looking like a chav, wearing my favorite hoody and trackie bottoms with my hair shoved up and no make-up on.

As for work wear I keep things pretty much the same, black/grey chinos with a baggy top and cardigan/jacket with flat shoes. It amazes me that girls want to wear heels to work. And again my hair is tied up everyday, with minimal make-up. This is purely for two reasons, I want longer in bed in the morning and I sit in a chair all day so I want to be comfy.

Even though I dress like a boy pretty much everyday, I am the complete opposite if I am going out at night or going to a special occasion. This is when the girly girl side of me comes out. I love wearing gorgeous dresses and heels, fake tanning, putting all my favorite make-up on including my fav red lippy, and having my hair done all long and curly. I probably look like a completely different person. This is because it's normally a one off or special occasion. I only tend to go out once a month, if that, because I am always just too tired and achey. I would much rather snuggle on the sofa.

When I am going out, my mum tends to help me with my hair because I would be in so much pain if I had to wash, dry and style it myself. I make sure I fake tan the night before. Then I can relax and take my time doing my make up. 

      

Everyday Outfit                  Going Out Outfit

(Hair tied up, Hoody, Baggy Top, Pants and Trainers)         (Dress, Heels, Hair Curly, Make-up and Fake Tan)

Definitely look like a completely different person!

As long as I'm happy and comfy then that's all that matters.

You should never care what anyone else thinks, it's my health and standard of living that is more important.

I try and do everything possible to make everyday life easier for me and if that means dressing like a boy then so be it!

My Big Fat Rant...

Lately something has really been bugging me so I need to have a big fat rant to get it out of my system.

Due to my Firbomyalgia I only work 16 hours a week. This works out as 4 hours a day over 4 days in the week. So to full time workers who do 35+ hours a week, I can see why this doesn't seem much at all. 

HOWEVER...

I am sick to death of people saying comments to me about how little I work. A few common examples...

"I wish I was going home at 1:30pm!"

"It's alright for you, you've had a lie in before you came to work!"

"How are you tired? You only work 4 hours a day!"

or

"How are you tired? You've hardly done anything today!"

"It's alright for some getting a day off in the week!"

and the one that really gets on my nerves...

"Your lucky you only work part-time!"

In what way am I lucky?

I have a debilitating illness that affects my everyday life and causes me excruciating pain and fatigue, yet I am somehow lucky!

Yes, I may only work 4 hours a day but to me it feels like forever. 

Just 4 hours of work will leave me so tired and feeling so ill that I have to go home and get back into bed. There is rarely a day when I have been to work and not gone home for a nap straight afterwards.

I even have special pyjamas, eye mask, alarm and fur blanket for my afternoon naps!

Yes, I have a day off in the week but I mostly spend this in bed, resting, recovering and saving my energy to get me through the rest of the week. 

However, a lot of people are surprised to know that I don't just have the one job. I am very lucky that I have been making handmade hair accessories for a company for 5 years now. I make these from home and can amazingly do them in bed while I watch tv and films. I would not be able to cope without this small extra income. And yes I accept bragging rights for how good my second job is, especially as one of the shops the bows are sold in is harrods! 

(so even when I'm at home, I don't stop working)

I have also recently finished my nail technician training and have started doing a few treatments here and there to earn some extra money. As I do anything and everything I can to be able to work more than 16 hours a week. However, bows and nails do have to come second to my main job and illness as sometimes I am too tired and ill to do them.

A lot of people don't realise how debilitating and crippling Fibromyalgia can be. A lot of people with this condition have had to give up work all together. I am at a stage with my illness where I do manage to work even if they are limited hours and I have to push myself to do it. So don't be surprised if you say a comment about how little I work and I get an urge to punch you in the face!

My new response that tends to shut people up immediately when they say remarks like the ones above is...

"Well why don't you get a disability or debilitating illness and then you can work as little as me?!"

I would do anything to be able to work full time!!!

Rant over.

8 Months Later...

I can't believe the last time I wrote a post was 10th May 2012, these past eight months have gone unbelievable quick! I hope that people who used to be able to relate to my blog still have the link saved somewhere as your support was amazing!

A lot has happened in those eight months and I am still in at my 'new' job which is brilliant news, as my problems with my old job were causing my Fibromyalgia to worsen. I was stuck in a rut and if I'm honest I couldn't see things getting better at the time, but luckily they did.

If I have learnt anything about my Fibromyalgia, it's that the happier you are with your life the easier it becomes to manage. The pain, fatigue and general feeling ill will never go away BUT the happier I am with things the more I am willing to cope with it and push myself to do more. If I'm doing something I really want to do, the pain that comes after is worth it.

This has been a huge eye opener for me as life is too short to be unhappy especially if you have a debilitating illness. Now I quite enjoy my job and the people that I work with which means getting out of bed isn't as bad. I have amazing friends who understand when I can and can't do things. But most of all my boyfriend and my family have been incredible at helping me see things more positively. 

It is so easy when you have a disability to just let it get the better of you and give up, which is what I did. I was so depressed and upset all the time, thinking why me? Why do I have to have this illness? Then I came to realise even though I can't imagine being in anymore pain and how hard it is to cope with sometimes, there is always someone worse than you.

Don't get me wrong, it's not all fine and dandy. I still have days where I feel so unwell and in that much pain I struggle to move and I don't want to get out of bed. I still get upset especially with people who don't understand an invisible illness. But I'm slowly learning to just accept it as it is just something I'll have to put up with.

My new years resolution is positivity, as it's amazing how your way of thinking can change your life.

I am currently looking into different supplements for Fibromyalgia, and will be the topic of my next post.

If you have any to recommend or have heard have helped please let me know.

Finally some good news...

If you have been reading my past posts you will know that I was soon to be unemployed. Well, a lot has happened since then. I handed my notice in four weeks ago and today was actually supposed to be my last day. After my section manager read my quite nasty resignation letter about how they have mistreated me (someone with a disability) she was very annoyed that this was aloud to happen. She has now managed to find me another job in the company but in a different department doing basic admin work that sounds perfect for me, even though it's only temporary until the end of the year. But it's better than having no job!

So my advice to anyone going through what I went through with your team leader claiming they can't help you, you should always go higher because at the end of the day they're not always trained to know how to deal with disabled employees. Lets just say he should be getting a very stern talking to from his boss!

As I thought I was leaving and after being sick of being treated unfairly by my team leader I was suffering with stress, anxiety and could feel a panic attack coming on at the thought of having to go back to work and see my team leader. So my doctor signed me off work until what was supposed to be the end of my notice. This means I haven't been in work for the past three weeks. And just my luck I had the worst week Fibromyalgia wise I've ever had and that is an understatement. 

I was experiencing pain in new places which I didn't even think was possible to have pain. I felt like my bones were hurting as well as my muscles and ligaments. I was struggling to lift my arms up and this is what I found hard to deal with the most as I've never had pain that severe in my arms before. I couldn't lift the milk or the kettle, so making my own breakfast was out the window. I couldn't wash my hair myself so queue the mother. She had to wash and dry my hair for me. I was struggling to drive so for the first time in years I was asking my parents for lifts. I just felt like I was loosing my independence. All I kept thinking was is this going to be it from now on, is this what my pain level is now going to be. So I was so upset, everyday I woke up and I was no better I'd just cry thinking this is what it's going to be like everyday.The only medication I found would take the edge of was Ibuprofen, so I was dosed up on that daily taking it constantly as soon as it had hit four hours since my last dose. This went on for a good two weeks. I struggled to do anything.

Luckily it was just a very bad attack and I slowly started to feel better. Having the movement back in my arms was the best feeling in the world. As much as I'm hateful towards my Fibromyalgia I am so grateful it didn't stay that severe. However, I could have a bad attack like that again at any time. That's the worst thing about the illness, how much of a roller-coaster it is. One day you can see me and I'll be having a good day so I'll look fine, but the next I could have a bad day and be crippled in pain. Baring in mind, you won't see me on my bad days because I'm more than likely going to be in bed or staying as far away from public places as possible.

My favourite quote: I may not look sick, but you don't look stupid.

On Saturday 12th May is Fibromyalgia Awareness Day, please just take a moment to think how it would feel to have an illness so painful, so tiring and so depressing but no one could see, understand or even help. To everyone else you looked normal.

Anti-Depressants for Fibromyalgia...

First of all I would like to apologise for my lack of blogging lately, a lot has been going on especially with work. Saying I've not been well lately would be an understatement. 

I posted a link to my blog on my Facebook and the response still amazes me to see that you really aren't alone even though it does feel like that with such a complex and varying illness, no two people with the condition are the same.

So this post is to tell my experiences of taking anti-depressants as a treatment for my Fibromyalgia. Some doctors believe that anti-depressants can help make some FM symptoms more manageable because as FM sufferers know, nothing will get rid of them. They can be used to help ease pain as they affect the nerve endings or just to help you relax to get a better nights sleep. 

I have currently been on Venlaflaxine for just over a year now and it's a noradrenaline based anti-depressant. The most common type of anti-depressant used for treating FM is a serotonin based anti-depressant but I experienced a very uncommon reaction to them. The first anti-depressant I tried was Setraline which is a serotonin based one. I was taking one 75mg tablet a day but on the second night I suffered a very severe reaction which the doctors described as an overdose but as I'd only taken two tablets they said my body had an uncommon reaction to the serotonin called serotonin syndrome. 

Please do no let this put you off trying them though as like I said it is uncommon to have this reaction.
I first realised I wasn't right on them when I started to feel high as a kite, I was having fits of giggles and hallucinating that the words on my TV were jumping. I then went to feel sick and dizzy and when I got up in the night I collapsed and had to be taken to hospital. I was only in for one night while they just monitored me but luckily I was fine and just had a few days off work until it was completely out of my system. 

Being too scared to try any other serotonin based anti-depressants, that's when my doctor suggested going on a noradrenaline based one which are normally used for treating anxiety. I first started on 75mg a day but when my body started to get used to this dose I increased to 150mg a day. I had no reaction what so ever on these and at first didn't suffer from any side effects. They were great for relaxing me and helping me sleep better at night. And if you suffer with FM, you understand the importance of a good nights sleep. So if that is something you suffer from I definitely recommend to give these a go.

As I am only 19, I started taking antidepressants when I was 18 which was a scary decision to make as they affect the chemicals in the brain as they are first and foremost a tablet to treat mental illnesses. But I would only recommend trying them if you fully trust your doctor. As if you don't suffer with depression or anxiety they can be quite strange to start with. I started to feel no emotion at the beginning, my mum would describe me as being numb. Nothing would really bother me, I was never excited or stressed out by anything. Now that my body is getting used to them it's quite the opposite. I'm never just normal, I'm either extremely happy or extremely sad. Which can throw me off a bit because there doesn't seem to be any middle ground. 

Lately I have been starting to suffer with quite bad side effects from them. My doctor calls them 'zaps' as the only way to describe it is that it feels like your getting an electric shock through your body that literally makes you feel like your jolting or twitching but it can be quite painful. They are horrible and they come and go.

MAKE SURE you ask what type of anti-depressant your taking. Some are slow releasing and can stay in your system for a couple of days. Where as other are fast releasing and when it comes nearer the time to take another dose they can start to wear off. I am on the fast releasing and if I miss a dose then I start to get minor withdrawal symptoms. Stupidly I forgot to take them last night, so I thought I'd write this blog today to explain how it's made me feel. I am getting these 'zaps' every couple of seconds as well as feeling extremely nauseous.  The 'zaps' have given me a severe headache, backache and are even making my eyes ache. I have been suffering all day with numbness and tingling in my hands and slurring of my words. It scares me how much these tablets have an effect on my brain and body to cause me to feel like this when I miss one dose. 

This post was just to tell you my experiences with taking anti-depressants, I don't want to scare anyone out of trying them because they do help. I wouldn't still be on them if they didn't but I just wanted to tell you all what happens to me when I'm on them because my doctor didn't warn me I could have such bad reactions or any of these problems on them. So if nothing else will take the edge off (which it didn't for me), I recommend these as a last resort. But I recommend trying all other medication roots before trying these are they are very strong and scary medication. My doctor used them as a very last resort and waited until I was 18.

In other news, as per my last post about my employment situation. I have had to hand my notice in, even though I have no other job lined up. This is because of how ill the job has been making me, I'm so drained physically and emotionally after a day there it was becoming unbearable. Even though I'll have no constant money flow soon, my health and happiness is the most important thing. FM sufferers need to try and make themselves as happy as possible as if your happy it will naturally make symptoms more manageable. So as my dad explained it, if I was walking the plank I'm jumping before I'm being pushed. As it would look better on my CV to have left rather than be sacked due to absence and my illness.

Downer than ever...

Judging by the title this isn't going to be a very positive post as I don't have anything positive to say. Lately everything just seems to be going from bad to worse.

I have had the flu and been off work the past few days. When I catch something else like a cold, flu or virus it makes my Fibromyalgia symptoms so much worse. I ache more, I have less energy and just generally feel more rubbish than usual. So day to day things do become pretty impossible for me when I'm ill, my mum's even been having to dry my hair for me! 

As I've had quite a lot of time off work in the past few months due to my condition and stress from working in a sales based role. I have been put on report for my absence as it's too high for someone who only works 16 hours a week. God help me find another job if I can't even handle rolling out of bed to sit on the phone for four hours a day. As I've now had further days off for the flu, I am pretty much on the road to being laid off work. I'm really stuck with options as I don't know what to do. Who will want to employ me if my previous job I was sacked for having too much time off sick?! Looks like a trip to the local Citizens Advice Bureau is on the cards now. So if anyone knows any information for being fired due to illness PLEASE let me know!

I've also been having a pretty rubbish social life, all I want to do is lie in bed and rest with a good film or evening TV. I don't have the energy lately to go out and do things, so if I do it tires me out so much. People really do take being able to go out and do what they want whenever they want for granted, I'd love to be able to. I feel as if I let people down all the time as I have to cancel things last minute or just say no if it's something I know I won't have the energy or strength for. It makes me feel so bad when I have to let people down, I will literally stress and feel guilty for days. As they don't see it as their ill friend being too ill to do something, they see it as a normal friend that's letting them down which isn't the case. I would LOVE to do all the things I've missed out on due to illness such as holidays, festivals, nights out, nights in and days out. I am starting to realise though that friends that make me feel like that if I can't do what they want or go out with them aren't friends worth having. Friends should understand that I'm ill and understand I can't do everything they can do. 

Jeez, by the sounds of this I'm going to be jobless and friendless soon haha!

No I do have some amazing friends and family that do understand and I couldn't cope without them, but no matter how many people I have around me I still feel lonely as I'm the only one who really knows what I'm going through. As every Fibromyalgia sufferer is different. Some can have jobs, some can go to university and lead a normal life. Guess I drew the short straw as I can't do half the things they can.

So yeah I'm downer than ever lately, but when you've reached the bottom, the only way is up!

Hopefully my next post will be good news or that I've won the lottery!