Friday, 22 June 2012

To the future...

I started writing this blog as a way of letting out the pent up feelings of frustration and sadness I was feeling during my struggle with CFS, fibromyalgia, severe anxiety and depression. And as far as I was concerned it was working. After my last post I think I was finally coming to grips with my feelings and had finally learnt to deal with my issues. Since my last post my health has slowly but steadily continued to improve from where I started after my diagnosis, and finally I have reached the point I'm at now. I am most definitely at my healthiest since becoming ill, I have gone from spending my days and nights in bed, not able to sleep or even sit up because of the pain and other physical symptoms, to holding on to a part-time job, babysitting and somewhat of a social life. Life is not perfect, but compared to how it was I feel pretty damn lucky.

That is not to say that everything has been great though. I feel like I'm in an extremely tentative position; if I don't do enough physically I will become weak again, and if I do too much I risk a relapse that could make the last few years of effort worth nothing. It doesn't sound too complicated, but when the line between too much and not enough is constantly being moved from day-to-day it can be a frustrating and stressful process. But I guess in the long run it's worth it, after all what is a bit of stress when I can have a life again?

I may have fallen a few times, and I definitely complained more than was necessary at times, but I'm proud of myself for how far I've come. I'm far from perfect, I'm flawed in more ways than I could begin to describe, but I'm strong. It is such a slow process from where I am now to where I would like to be but I know I can do it if I try. And there is no chance of me giving up now, not when I can look back and see the difference I've made to my life.

Adding on to a subject I covered more than once, the people around me have been a great influence on how well I am doing and I have to thank them for everything they've done. There are only a handful of people I am willing to let into my life completely, and the ones I do I trust implicitly. I know they have had a lot to deal with because of the issues I have, but I hope they know I am willing to do as much for them as they do for me. I don't take anything people do for me as granted.

As always, thank you for reading my blog.

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. (

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