Thursday 29 September 2011

We can't control our fate

Hello everyone, I am very sorry for not posting for a long period. I spent 10 days in the Canary Islands and then was unwell and didn't have the concentration to write, I hope you will forgive me!

Recently I have taken on a new outlook on life, I have always struggled with being a positive person, I worry about everything (mainly due to my severe anxiety) and I can never just relax and let things happen.

The problem I have had since having CFS is that I have made plans to do things (I will take a year out and then go and get my A Levels finished, for example) and when I have failed to do this because of my illness it has felt terrible. I don't know about others, but as someone who suffers from CFS I find that it makes you feel quite helpless, and when you start a project and you start to feel unwell and have to stop (admitting that it is time to stop is one of the most difficult things for me) it makes you feel like a failure.

Feeling like a failure because you are unwell, something which is completely out of your control, is ridiculous. And I know this, but that doesn't stop the extreme feelings of failure. Since I was 16 I worked so hard on trying to become a doctor, and when you fail to complete the steps to get there it starts to feel like the dream is getting further and further away.

During my holiday I learnt to let go completely, I lost my inhibitions, stopped worrying about what may or may not happen and just let myself relax. This was the first time I have ever been able to do this, and it felt amazing.

Since my holiday I have learnt to keep the feeling I had on holiday inside and use it in everyday life. I have realised I have tried to control my life so much to get what I wanted out of it but doing this has only made it more stressful.

For now, I take life as it comes. I still know what I want to do with my life but I have no plans. I will do it, but when it is right for me, and right now I don't have the space in my life and the ability to throw myself into something so draining.

As part of my new outlook, I am attempting to do things which are achievable. At the end of November I am booked to do a tandem skydive for the charity Baby Lifeline, I am nervous but so excited that even though I'm unwell I can have a unforgetful experience and feel a sense of achievement.

As they say, the road of life is a bumpy one. I will admit that I am not completely positive about everything. As my symptoms fluctuate I do go back to feeling useless and like I will never achieve anything again. But even a bit of positivity in life is better than none at all, so I am satisfied.

Thursday 25 August 2011

Brain Fog

Brain fog (also called fibro fog or cognitive dysfunction) is one of the most common complaints of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). For many, it can be severe and can have just as big an impact on their lives as pain or fatigue. In fact, some people say brain fog is more of a disability than their physical symptoms. (http://chronicfatigue.about.com/od/symptoms/a/brainfog.htm).

When I was first diagnosed with CFS I was told what to expect in terms of physical symptoms, but I was never warned about the psychological symptoms. Through reading other people's experiences I have come to know these symptoms as 'brain fog', and this is as close to a perfect description as you can get. You do feel like there is this great, thick, grey fog hanging over you and blocking you from thinking clearly. Although the severity and the type of symptoms I experience differs from day to day, the general fog is always there, hovering over me and stopping me from feeling like myself, even for a second.

To someone with CFS/ME just the mention of the words brain fog will bring to mind all the symptoms and they will understand what I am talking about, but those who have not experienced this will need more information to be able to understand what it does to you, and how it prevents you from being a normal person, to the point of not being able to hold a conversation. So for those people I think it would make sense to explain how it affects you, don't worry I will try to keep it basic and not be too technical!


Description -

Like the physical symptoms, brain fog varies from day to day and usually gets more severe as the physical symptoms worsen. One of my main symptoms of brain fog which I experience on a daily basis is problems with my short term memory. I often feel like I'm losing my mind, I forget things that I have only just been told and I have to write down everything I have to do in order to at least try and remember them a bit better. Often I forget people's names, and even where I know them from. It leaves me feeling very confused and frustrated. I also feel embarrassed, at my age I shouldn't be having these kind of problems with my memory, isn't forgetfulness only for old people? Apparently not...

On the same kind of topic brain fog also often makes it difficult for me to vocalise what I am thinking, it is a basic thing we all learn how to do. We think what we want to say, and then we say it. Simple really. But since I have become unwell I have found that it is not always simple, I often mix up my words, or say the wrong word. Like saying the word 'kangaroo' when I meant to say chair (that one isn't fake, I genuinely did that a few days ago!).

Another big problem with brain fog is that it severely affects your ability to concentrate. When I was still in school and unwell this was extremely frustrating for me. I would sit there in lessons, I would be listening intently, but I would not have taken anything in after the first few words, I simple could not keep my mind on the subject. It wasn't that my mind wandered onto something else, the best way I can explain is that it just seemed to go blank, nothing could get in and nothing could get out. Also you can be distracted very easily, and once you have been distracted it is extremely difficult to get your mind back on the subject. Not exactly helpful when you are trying to take in hundreds of pieces of information everyday!

Also I often have trouble with numeracy, I was never the best at maths but I was good enough to do simple math pretty swiftly. Since becoming ill numbers are like my worst enemy. I can't remember even a short sequence of numbers and I struggle to do basic maths, it isn't that I have forgotten how to do it, it is just that when I try to figure it out my mind goes blank. It just sounds like a jumble of numbers that mean nothing to me.

Hopefully this post was not too much of a rant and has informed some people of how CFS can affect you mentally (although I failed to mention the other main psychological symptoms which are depression and anxiety).

It leaves you feeling confused and separate from everyone else. In a bubble, and completely incapable of basic mental tasks which even a child could do.

Sunday 14 August 2011

Thank you

I just wanted to take a bit of time to thank the people that have been there for me over the last few years. They may not always understand what I'm going through and they may struggle to know what to do to help, but they have always been there for me when I have really needed them and I am eternally grateful for this. I don't think I would have come this far if it wasn't for the people around me.

I have a wonderful mother who despite working extremely hard always makes sure I am okay and always does whatever she can to help me. I also have an amazing sister who is not good at the touchy-feely stuff and sympathy but who is quietly understanding and makes me feel like a normal person. We shop, we gossip, and I adore her children, when I feel low my niece and nephew are the first people I want to see. You can't be miserable when you are around two beautiful and energetic, cheeky monkeys!

My brother is the type of person who doesn't express his feelings willingly but on a few occasions I have seen his softer side and I know he would be there for me if I needed him. He is a wonderfully funny person and he never fails to cheer me up. His partner is also someone who has had a great impact on my recovery. When she first came into our family I was always in bed, always in agony and miserable. Gradually I have improved, but whenever I have had bumps in the road and moments of doubt I have been able to talk to her about it. She listens, she asks questions, and she does whatever she can to understand.

Last, but no where near least, is my friend Alice. I have known her for about 10 years but I never knew what a good and loyal person she truly is. She is always there for me and she brings a sense of normality to my life. I have days that I spend with her and I almost forget all about my illness and feel like I am myself again.

In the first few months of my illness I was told that one of the most important things was to have a good support network. I dismissed this and as a result I didn't feel like I had anyone to lean on. Since accepting that I need support things have become a lot easier for me, and I am so incredibly grateful to the people around me that have helped me see that I am not alone.

I love you all xxxx

Miss Alice Jessica Duffy and myself, she spoils me rotten =)

Some of the wonderful people in my family.

Monday 8 August 2011

Love and Chronic Fatigue Syndrome

Relationship are difficult at the best of times. Firstly you have to find someone you like and connect with, who feels the same about you. Then you both have to want to be in a relationship. After that there are always problems, differences of opinions, various stresses along the way. When you add a chronic illness into the mix things can become a lot more complex.

For the first two years of my illness I had decided to stay away from relationships, I had so much going on and I needed to be concentrating on myself and my progress. But after those two years I met someone who made my stomach flip, gave me butterflies, someone who I would be happy to be around all the time. For this person I began to change how I felt about being in a relationship whilst having my condition. At first I wanted things to be casual, I am still not sure whether I did this because I had been alone for so long and was tentative, or whether it was to protect myself from what I had feared from the beginning; that my illness would cause problems and it would fail faster than I could imagine.

Eventually I jumped in with both feet, I knew I wanted it, but I still was so worried about the effect my illness would have on the relationship. At this point I was also attempting to stay in education and complete my AS Levels, due to this heavy work load, the need for me to take time for myself to relax, see friends and to go to all the appointments I had with doctors, psychologists, consultants etc. I was not at all sure I would have the time and space in my life for a relationship. But like all people who fall head over heels for someone, I ignored these doubts and told myself everything would be okay. For a while I was right, things were perfect (or at least they were from my point of view), for the first time in my life I knew what it meant to love someone; to want to be with that one person every second of the day, to physically feel how much you miss them when they aren't around, to want to give up everything to keep them happy and to feel like without them you have no future.

As is often the case, there was no happy ending to this story, but at the age of 18 it was unlikely I had met my soul mate, and that everything was going to work out. He ended things with me, to this day I am still unsure of why, but I can say for sure that having CFS got in the way of my relationship. I couldn't spend a lot of time just relaxing with him, I was constantly bombarded with symptoms of my illness and it is hard to know how much to tell the person you are with. You tell them too little, they feel like you are hiding it from them and you don't trust them with it, you tell them too much and they can't cope with trying to carry the weight for you. In this particular relationship, I think I kept too much to myself. I pretended to be okay, I kept the symptoms to myself and I tried not to seem too unwell.

Earlier this year I entered into another relationship. This one began much differently. I was set up by a friend and was unsure whether I wanted to put myself into such a vulnerable position again. We started talking more and more, and eventually I began to fall for him. I loved his kindness, his sense of humour, and I had complete trust in him. He was the most genuine person I had ever been with, like a breath of fresh air into my otherwise stressful and lonely life.

When we got together everything was perfect, I was confident that this was going to be special. This person was going to make a big impact on my life, whether it was going to be good or bad I was once again willing to take the risk. It was too late to go back, I was falling for him and there was no way I was going to go back to being without him. For two months I had the best time of my entire life, for the first time I felt comfortable enough with someone to let out all my feelings, all my fears, all my wishes. I shared my illness and I wasn't fearful of doing so.

Eventually things became strained, gradually the relationship deteriorated. I tried so hard to fix things, but I was fighting against a brick wall. He had given up on us, and there was nothing I could do. I also completely put this down to my illness. Maybe not so much the chronic fatigue syndrome, but definitely the depression and severe anxiety. He once told me he found it frustrating that I would just go quiet and he had no idea how I was feeling or what I was thinking. I was distant, and he didn't know how to find a way in.

I don't consider him to be a bad person at all, things happen in relationships, if it wasn't this it could have been something else. There is a reason people feel such pitty for those who suffer from chronic illnesses, leading a normal life is almost impossible (actually I am pretty sure it is completely impossible but as usual I'm sure there would be someone out there that would prove me wrong). Long term health issues affect your life, day-in, day-out. Some people do not have the capacity to deal with this, either they find it hard to empathise and feel like they are on the outside, or they find it to be too much of a weight to carry. For the person with the illness, this is hard to comprehend, you have spent so much time grieving the loss of your life as it was and adapting to the new one which has been handed to you that you can't see how someone cannot just take the time to understand. But of course it isn't this simple, some people don't want to, and others purely can't do it. It still hurts to know someone I loved didn't want me, especially if it was due to something which I had no control over whatsoever, and didn't even want.

Some people are lucky, and they find a person who they can open up to completely. Personally I think if someone with a serious condition which affects their life on a daily basis wants to have a succesful relationship they do need to open up about their illness. It may be difficult for the other person to understand why sometimes you can't do normal relationship things, like going out to dinner or to see a film. But if you are lucky and it may come down to you explaining in the right way (I find explaining facts seems to work a bit better than ranting about aches and pains and 'brain fog'), your other half may be patient, and understanding enough for them to understand that this is just the way you are now. You are no less of a person, you are just experiencing more difficulties on a daily basis than the average person. And yes sometimes you may get stressed and upset for what seems like no reason (and sometimes it really is about nothing, I've cried over not being able to find my shoes on mroe than one occasion!) and these emotions are hard to handle at times, but you still love people with the same intensity, and you can share your love with them in your own ways. Some of the times I have felt at my closest to a partner has been when I have been unwell and upset and we are just sat together embracing. Something else to appreciate is that the person you are with suffers because of your illness too, they feel your pain and frustration and if they could, they would take all your problems away in a heartbeat.

The end of this relationship occurred 3 months ago, and to this day I still carry it around with me. At first I fell into a depression, I felt that I had clearly done something wrong, and that if I didn't have this illness things would have turned out fine. I blamed myself completely and I physically yearned to have that person back in my life. After a month of being separated I was still struggling with the ending of this relationship, coping with having left eduction (I did this during the relationship as I felt strong enough with the support I was getting from the relationship to finally admit it was the right time to leave), coping with my limitations and the extremely powerful exhaustion of carrying this great weight around with me all the time. It was dragging me down, I felt drained, weak, powerless and hopeless. My whole world seemed to have crumbled around me and I didn't know how I would ever get back up after falling so far into the darkness.

Getting through this 'bad patch' has been one of the toughest things I have experienced, for a while I was too exhausted to even try, but eventually I started working on getting better. Anyone who has experienced a sudden crash with depression will know that clambering your way out of the darkness is an extremely difficult thing to do. It takes a very long time for things to seem okay again, it takes time for the dark clouds to pass in order to allow the sun to shine through, a little bit at a time. It is amazing to see how far I have come.

Recovering from this extreme low has been one of the most difficult things I have ever had to do, and I am definitely still working at it. Only recently I have discovered the importance of sharing my worries with others to lessen the burden (If you don't do this I beg you, give it a try! You could not imagine how light you feel once you share your load with another).

I still have quite bad depression, I have my low days and I rely heavily on anti-depressants and anti-anxiety medications. But I can finally see the teeny tiny little light at the end of my tunnel. I am still struggling to pick up the pieces of my self-confidence and to be able to trust all the people around me. But I am now able to look to the future, for the first time in a long time I can see a future. I am moving forward and I am excited about what life has to offer.

Friday 5 August 2011

The Future...

Hello again, it is a brand new day and time for a brand new post!

Something which has been on my mind a lot lately is my future. Since I was younger I had a clear image of what I wanted my future to be like; becoming a doctor, getting married, having children, the whole package. I even had a timeline of when I wanted all of this to happen. I am not at all naive, I didn't think it would all turn out exactly how I had imagined, but I never imagined that things would change drastically enough to uproot all my plans

For a while after my diagnosis I tried to carry on with the plan. Starting with finishing my A Levels. Looking back, this was my way at desperately clinging on to the life I had before my illness, at the time I was in complete denial. I was convinced I was doing the right thing, and that if I made myself worse it would be worth it in the end (ridiculous I know!). Eventually the illness took over completely and I had no choice in the matter, it was time to give up on finishing my education for now.

This was an extremely difficult thing for me to do, this was the last part of my life before CFS, and I hated the feeling of giving up on holding on to that. This decision also brought up a lot of questions about the rest of my future. If I never got back into education there was no way of becoming a doctor as I had always dreamed. The idea of giving up on this dream felt like a dagger to the heart. I had a passion for medicine and had been studying and learning about everything I needed to know since I was in my early teens. I knew being a doctor was what I was meant to do, but maybe now I would have to construct a completely different life to the one I had imagined.

I made the decision to leave part-time education around 6 months ago, and I have only just began to get my head around the idea of adapting my future to fit in with my illness. There is still a chance I can get the life I imagined, and if I don't well then I will just have to cope won't I! Things change, and we need to adapt. One lesson I have learnt is that I was actually quite closed-minded about what my future could be, since I have been forced to look at the alternative ideas it has shown me that there is so much more out there

Lately the best thing I have found is to try and avoid dwelling too much on what my future will hold. It is time to stop fighting against Chronic Fatigue Syndrome and listen to my symptoms. I need to take time for myself, and that is what I intend on doing. For the time being I am going to put all my effort and concentration into getting through this ordeal. The more you fight against CFS, the worse it hits back at you.

Sunday 31 July 2011

Chronic Fatigue Syndrome and Depression

According to statistics put forward by a group of doctors "true clinical depression probably affects between 25-33% of ME/CFS sufferers at some stage."

Since the onset of CFS I have struggled with my emotions. In the beginning it was purely a case of being frustrated that I wasn't getting the help I so badly needed, and that no doctors were taking my symptoms seriously.

Once in hospital I began to lack confidence in myself, when the doctors told me they were observing me for anorexia I began to convince myself I must have it, especially since at that time they had no other ideas about what it could be (or at least none that they were telling me about). During this time I was just incredibly confused about what was happening with my health, both mental and physical.

Once I was given my diagnosis of Chronic Fatigue Syndrome I had a sense of relief. I knew what my illness was, therefore now I could begin to overcome it. Gradually I began to realise that it was not going to be that simple, I did not know a great deal about CFS, but as far as I was concerned it was the end of the life I had dreamed of. No more career, no more relationships, no more going out and having fun. This was a life of pain and suffering, and there was nothing I could do about it.

This very quickly spiralled me into depression. I had rapidly gone from having a purpose and having fun with friends, to being so tired and in such agony that I couldn't leave my bed. I may as well have been stuck done with duct tape. I had no purpose, I had no life other than what existed within the four walls of my bedroom, and I was incredibly lonely. Gradually the intensity of my depression grew, it went from feeling low, to feeling extremely low, and eventually to feeling completely hopeless. As far as I was concerned this is was going to be my life from now on; pain, sickness, boredom, loneliness.

On a visit to the hospital my consultant recognised my symptoms of depression and quickly referred me to a psychologist. I was apprehensive, but I need not have been. As far as I am concerned, the psychologist I regularly saw changed my life completely. She taught me how to cope. As my mood improved I gained the motivation to try and do more things. I began to see that I was not completely restrained to being alone and doing nothing, and that this was not the end for me.

All of this occurred in the first year of my illness. In the following 2 years my depression has fluctuated massively. I spent a year back in education and the more I felt like I was getting back to my old life, the more I was moving away from all those feelings of despair that came along with the depression. But as things began to go downhill and I was forced to leave education as it was making me more ill, my depression returned, and this time it definitely came back with a vengence. This was very recent for me, and I am still in the process of building myself back up, with the help of a counsellor and my gp. My mood has improved a lot, and I can see the light again. My mood fluctuates everyday; sometimes I feel full of life and like I can do anything, and as a result I feel extremely positive. On other days, perhaps due to my symptoms becoming worse, but also often for no reason at all, my mood will fall and I will become quite low again. It is not easy to handle, and the constant fluctuations mean my life is quite unstable at times.

I have no idea what will happen in the future with my depression, but whatever happens I just hope I never hit the abyss again. By this I mean getting to the point of no return, not being able to see a way out and feeling like there is no reason to go on. So long as I keep my head above water, and concentrate on all the good things I have in life, I know I will be okay.

Anyone who has never experienced depression may find it difficult to relate to this post, and see it as one big complaint. To them all I would like to say is that depression is not something you can just shake off and get over. It is a dark shadow which follows you everywhere, sometimes the light shines so bright you think you have lost it, and you start to get excited about your life. But eventually the light will fade and the shadow will reappear, and you realise you didn't lose it at all, it was just hidden. It is not something you can outrun, and attempting this just makes you exhausted and extremely frustrated. The only thing you can do is accept the cards you have been dealt, and learn to make it as easy as possible for yourself.

"Mysteriously and in ways that are totally remote from natural experience, the gray drizzle of horror induced by depression takes on the quality of physical pain." - William Styron

Wednesday 27 July 2011

The 'bad days'

Since my symptoms have flared up today it seems like an appropriate time to wirte another post. My doctor, and everyone around me really, like to call this a 'bad day'. I don't really like that label since it suggests the other days are 'good days', my doctor knows this and has started calling the 'good days' my 'not so bad days'.

Well I suppose I should explain the difference between my so called 'bad days' and 'not so bad days' shouldn't I?

I knew today was going to be a bad day yesterday, I had been really busy the last two days, shopping and seeing my beautiful niece and nephew. I did too much, which is something I do very often because I just like to try and do as much as physically possible, I don't want to miss too much because of my illness.

The first part of my 'bad day' actually started last night. I had insomnia and struggled to get to sleep, I finally dropped off at about 3am, unfortunately I then woke up at 4.30am, wide awake despite being completely exhausted! After a few hours I eventually went back to sleep and woke up at 8am.

Once I was awake it was very clear I was having a 'bad day'. I felt physically drained, as if all the energy had been sucked out of me and I had nothing left. My arms and legs felt heavy, I didn't want to move.

After an hour or so of lying in bed, watching tv and bracing myself to get up and go down stairs. Getting out of bed was a struggle. It is very difficult to explain the sensation I experience but I will do my best. It felt like every muscle in my body was too weak to work. They weren't contracting properly and I just wasn't functioning normally. I find this extremely frustrating as it makes me feel so weak and powerless. Along with this, when I stand up and start walking around my blood pressure dropped quickly and I became very dizzy and dissoriented. This symptom is something I always hide. I don't want people to know how weak I am, and how little I can do to prevent it.

The pain I experience is quite severe. I am on strong painkillers and still struggle to ignore the pain. When I first experienced the pain I get around 3 years ago I was horrified. How could I function when I was almost crippled by pain? Fortunately it turns out the human body is a very special thing. Gradually I began to adapt to the pain, it didn't seem so severe and I was managing to appear to be fine to those around me. I have always been one to keep issues to myself so I don't upset the people who care about me. Why would I let them know how much I'm suffering every minute of the day when they can't do anything to help me? It's my illness, my pain, and my problem.

One of the worst things about being in a 'bad day' is that I have to stay in bed all day, I don't mind this too much, I get to sleep and watch tv all day. Unfortunately on these days when I have nothing to do and I am feeling quite weak and low, I find myself smoking like a trucker. If I had the money I would easily be able to smoke around 40 cigarettes, compared to my normal average of 4 a day. Not very helpful considering I'm attempting to cut down and eventually quit altogether!

These days are hard. I can't do anything, I can't think straight and my head feels so heavy I just want to sleep forever. I'm in pain, I'm aching, I'm dying for some company to keep my occupied and keep my mind off my illness. These are the days when I find it hard to cope with my illness. The symptoms are severe and I hate these days.

I need a bath and to wash my hair, but I am much much to weak and tired. Therefore I either don't get it done or someone will help me. I hate this so much, I find it extremely embarassing to admit but it is so important to me that I show the whole picture. I want people to understand and learn, therefore I can't miss anything out.

In a few days I will be better, I will have some of my energy back (nowhere near how much the average person has but still enough to function), the pain won't be so severe, and I will be able to do things for myself again. I am so grateful for this, when I first fell ill I never had these obvious changes in severity of symptoms. Every day was a 'bad day'.

I do not write this to get pitty, I write this to show people how Chronic Fatigue Syndrome affects your whole life. The basic things people take for granted, like standing up, washing your hair, having a wash, for someone with CFS it is a massive struggle to do these things. Some can't do it ever, others like me are not so unfortunate. If this blog does anything, I hope it educates people, this is not psychological, this is not something which is just in people's heads, this is not just about being tired. This illness is real, it is severe, and it changes your whole life in one fowl swoop.

Sunday 24 July 2011

Making the best out of a bad situation

You may read my last few posts and think "my god that sounds awful", and yes it can be. But that doesn't mean it is all bad. I was once asked if I could find a way to go back and prevent myself from developing Chronic Fatigue Syndrome, would I do it? You are thinking the clear answer is yes. What insane person would choose to go through something so awful?

Well after a minute or so of careful thinking, I replied no. No, I would not prevent myself from developing this horrible illness.

At this point you may be thinking that I am completely insane, perhaps you are right. But before you decide for definite, hear me out.

My reason for that answer was simple. Before I got ill my biggest problems were things like not being able to buy the pair of shoes I saw in the shop and had decided I must have, or that the boy I fancied didn't feel the same about me. Since experiencing all the things that come along with Chronic Fatigue Syndrome I have realised that these issues are nothing compared to some of the things that other people go through. Who would be worrying about what shoes they own when they can't even get out of bed in the morning? Not me that's for sure!

Basically, going through issues everyday which the average, healthy person would dread, makes you put things into perspective. When you have to struggle just to complete the most basic things in your day to day life (getting out of bed, brushing your teeth, washing yourself, eating, etc.) things which once seemed important, no longer seem to be so.

Something which would mean hardly anything to someone without a serious illness, is something special to a Chronic Fatigue sufferer. I have had mornings where a polite bit of a chat from a delivery man has felt like the best present ever. You have to understand, often I spend day after day alone in my house, watching repeats on tv, eating the food I have kept close to the bed so I don't have to battle the stairs too often, and having a few naps. To you that delivery man may have seemed nosey, bothersome, or even rude. But to me he was a burts of fresh air in my otherwise mundane day.

It is so important not to stress over the small things, and to not take life for granted. I may get upset with those that have less problems than myself and who complain relentlessly, but I am well aware that there are those so much worse off than myself who would look at my problems and wish to trade places.

So basically, although I don't enjoy most of what comes with the illness, and I would be extremely happy for it to go away now I've endured it for a few years, I wouldn't like to give up the lessons I've learnt and the new perspective it has given me.

Saturday 23 July 2011

Much needed support

Everybody needs support from others, whether they admit it or not. Having support means you can achieve things you never thought you would be able to, and can experience things you never dreamed of. And more simply than that, it means you have someone to share the good times with, and to lean on during the bad times.

For sufferers of Chronic Fatigue Syndrome having help and support is, in my opinion, the most important thing. When you have someone to turn to, to distract you from the day-to-day problems, to wipe away the tears, and to keep you company during the lonely times, life doesn't seem so hopeless.

Over the last few years I have discovered that it is true what people say, you really do find out who your true friends are during times of hardship. Before I was diagnosed I would have told you that I had many good friends who I'm sure would be there for me if I needed them, but during the course of my illness I discovered that I was wrong. Many of those that I thought would be there, gradually faded away, a few appeared every now and again, and a small number were always there; holding my hand during the pain, telling me jokes to stop the tears and reminding me that it was all going to be okay.

I have never been one to ask for pitty, I feel incredibly uncomfortable when people tell me they feel bad for me because "it must be so awful to have chronic fatigue syndrome!". I understand why they say it, but this is my way of coping. Despite this I do sometimes need some support, especially during the hard times. Times when I am low, when I am in agony for days on end, or just days when I don't have the energy to leave the house. During these times, I don't know what I would do without a bit of support. (Well I tell a lie, I have felt like I had no support and it did not go well for me, but we can discuss that incident at a later date.)

To anyone who is reading this who has not gone through a problem similar to this, people turning their back on you during hard times may seem like the worst thing possible. But this is not the case. For me, the worst experiences I had were to have friends who said they would be there for me, and then couldn't cope, and left me to cope alone. During times like these I would question whether anyone would want to be with me, romantically or just for friendship. Could anyone really put up with all the stress that comes with this condition? The frustration of not being able to help in any way? Not knowing how the other person is feeling, and having to experience the extremely steep learning curve that comes with chronic fatigue syndrome?

For a while I believed that all this was true, it was hard enough for me to learn to adapt to such a life changing illness, I could never expect anyone else to do that for me.

But recently I have realised I was wrong. I was so damn wrong! I realised I had been focusing far too much on the people that couldn't cope and not enough on those who had been quietly following behind to catch me when I fell. Looking back now I see that there were some people who took it upon themselves to take on my problems and do their very best to support me whenever they could.

I have now come to the conclusion that it is not the illness which is forcing people away, it is them. Some people have the capacity to cope with all the crap which comes with being close to someone who is going through so much on a daily basis, and those that can't are not bad people, they are just different. If you find that you are being let down, and are not getting enough support from certain people, then it is probably time to accept that the chances are that you will never get the support you are so desperate for. But if you are lucky like me, you may also turn around to find those loyal few who have been there for you, every single step of the way.

Debut Post

This is my very first post, therefore I don't see any other option than to start from the beginning. In order to allow anybody who choses to read this to follow my journey from the very beginning.

At the age of 16 I had decided on a career in medicine, began my A Levels and was basically starting on the long journey to everything I wanted from my future. I was willing to work hard, and to not let anything stand in my way.

As it turned out, I didn't have a choice in the matter, after only around 2 months of studying for my AS Levels I was struck down with a mystery illness. I was not just tired, but exhausted. Physically drained to the point that it seemed impossible to sit up in bed in the morning. Along with this I no longer had an appetite. I thought about being hungry, knowing that I should be. But I never actually felt those hunger pangs. I less I ate, the less I wanted to eat, and eventually it became my mission to avoid food altogether. Why would I choose to eat when I was left feeling sick and so full from so little?

After months of not being able to leave my bed and losing weight faster than I could ever imagine, I was hospitalised. This was exactly what I had wanted for months, to be sent somewhere I could be helped and maybe made better. But it wasn't that simple, I went through one test after another. Being tested for all these diseases and illnesses was both terrifying and frustrating.

After putting on some weight (almost impossible to not put any one considering the fact that they were still observing me for signs of anorexia, and the nurses were writing down every last mouthful of food I consumed) I was released from the hospital, and sent home. I had no answers, nothing to make me feel any better, and no idea of what to do. In retrospect I think this is where my depression first became obvious. I had been to hospital, and gone through all the tests because I thought I would get an answer. I would be given something to treat whatever I had, and eventually I would be better. Instead I was still ill, had developed even more symptoms and had no answers.

A month later I was called back to the hospital, this was when I was given my diagnosis; Chronic Fatigue Syndrome.