My Story of CFS - Warts and all

Hi All

The beauty of having a blog is my ability to share whatever I feel like sharing with you. I know I use it primarily for book reviews, but I would like to take this opportunity to share something a bit more personal with you. I would like to share the story of my last 15 months. Please do not feel obliged to read on.

I really want to say that I am not sharing this as a woe me, looking for attention or pity. I am doing it because there is still so much mystique around  CFS (Chronic Fatigue Syndrome). Its symptoms can differ from person to person, and in the time I have been ill I have found it hard to find much out there about how it really affects people day to day.

I have spent the last 15 months scared, unsure of what was happening to me, and feeling like everything was falling around my ears. I have literally been in the biggest fight of my life so far. I realise how that I am a total perfectionist and have such high expectations of myself that I have been putting myself under so much pressure to 'snap out of it' I wasn't allowing my body time to relax and get better.

I hope that by sharing my story I might be able to help someone else who is going through this too. If I can spare someone even 5 minutes of angst or fear it will be worth it.

The journey down

I thought that it all started in the summer of 2013, but looking back now this started for me in January 2013. I got flu for the first time ever and was in bed for 3 weeks. That was an utter disaster for me. I was supposed to be strong, I couldn't stop and let people down, or show them any vulnerability. So rather than ease back into things slowly I went bang back into juggling a hectic and demanding job, running a local branch of a bereavement support group, volunteering at football at weekends, being a Mum, girlfriend and daughter. I thought I was invincible, and I loved doing it all.

By summer I was running on adrenalin. I remember now never being able to sit still, even rocking when typing on the computer at work, or constantly fidgeting. My sleep was in decline and I was down to about 5 hours a night. My appetite was insatiable as I was constantly looking for energy, but all I could stomach was McDonald's, and junk food. But behind all this adrenalin I could feel myself creaking. I was utterly exhausted and just wanted to sit down, cry and have someone spoon feed me nutrients and look after me. But I wouldn't admit defeat so kept my mask in place and carried on at full pelt without letting on to anyone how awful I was feeling.

That was until I got a heavy cold that just would not shift. My throat was swollen and I felt awful. I would come in from work and go up to bed. I couldn't carry on anymore. I went to the GP who ordered blood tests. They all came back clear. I was about to have a week off and they gave me a course of antibiotics as a precaution,

The 1st October 2013 I took the first one. I will never forget the date. They made me as sick as a dog and I couldn't get out of bed. Little did I know that this was just the start of 12 months of being bed bound.

Even after I stopped taking them I was lethargic, vomiting, upset stomach, couldn't stomach food, I ached, noise and lights began to bother me and I just had no energy or enthusiasm for anything. I stopped sleeping and could only manage about 90 minutes a night.

As time went on things got worse. I was up and down to A&E as no one was listening or believing me. I was so scared that I was seriously ill. Either that or losing my mind. I had so many blood tests but nothing. I was clinging on to every bit of hope. My B12 levels are very low, my cortisol levels are too high. Anything that might explain why I felt so awful. But nothing. I was starting to despair.

Rock bottom

By mid November I could no longer leave the house. I was constantly eating as my body felt like it was frantically looking for energy. I couldn't sleep. I couldn't get out of bed for the dizziness and feeling like I was going to faint. I couldnt bear to have any lights or sound. I was a total recluse in my bed. I couldn't bear having company because the noise of their voices was painful. I hated being on the phone as it was so painful and irritating. I could barely even lift a fork to feed myself, as the pain was so intense. I had constant double vision and tinnitus which was horrible.

Things that people take for granted became a massive task. I didn't have the energy or stamina to have a bath or shower. I couldn't even find the energy to wash or brush my teeth some days. I was only able to shower or wash my hair every week or 10 days, and not both at the same time. My pulse when even standing would be up at over 130 beats per minute. Simple tasks were like an aerobic workout. Going to the toilet would require sunglasses to shield me from the light and at times I would use a bowl when I couldn't get the 30 foot or so to the bathroom. Going downstairs might be a weekly treat and I couldn't prepare a drink or meal for myself. It was like being a baby all over again.

I tried cutting out wheat and gluten, then dairy, then corn. I was eating the worst diet of gluten free bread, boiled rice, roast chicken and oats. Each time I tried to introduce something different my body would make me so sick and by this time I had constant heartburn, was on the toilet up to 15 times a day and vomiting daily.

My lowest point came just before Christmas and I have never told anyone other than Simon about this as I feel so ashamed. But I think I need to share it so others don't feel ashamed of how their symptoms affect them. I hope people wont be repulsed by me for telling you, and will still like me.

I always try to make more of an effort when Simon is home. Unlike parents who love you unconditionally  I know that if you don't make that effort in a relationship you cant expect someone to stay with you. I knew I had to get into the bath and have a wash. The effort of getting out of bed and running the bath left me shattered. I was lying there and realised I couldnt get back out again. I was too proud to ask for help so I just lay there. I tried again to get out but it was just too much and I couldnt do it. I lost bowel and bladder control with trying so hard and vomited all over myself. I had no choice but to lie there in it all. I think that was the bleakest day I have ever had, and the scariest too.

I became a total recluse and my body just shut down. I would lie in darkness, with the tv for company and couldnt see any way out. I felt a total burden and was so ashamed that the person I was had gone and been replaced by this unrecognisable mess.

How anyone could stand by me or love me will always amaze me. I was a nightmare. I was so snappy, couldnt listen to anyone's advice and just wanted to be alone or better.

Things pretty much carried on like this until March,

The ascent starts

In late March I had had enough. I had heard about the Lightning Process and seen many success stories so I enrolled. It was a three day course and I didnt know how the hell I was going to manage it. But manage it I did. And I began to see results straight away. I could sit in light, my double vision went and the tinnitus eased.

Unfortunately at the same time my Boyfriends Dad took seriously ill and passed away. This was an incredibly difficult time and I didnt utilise the skills I had learnt as I should have. That said, I was able to go and see him in hospital. I was able to go to the house when his sister needed me, and I was able to go to the funeral. But they knackered me more than I have ever let on.

My regret is that I had so much going on for me that I couldnt support my boyfriend in the way I would have expected and would have liked to. I wanted to be involved and offer help to him and his family, but wasnt capable of going up there or doing lots of the practical stuff. I felt impotent and I have always been the do-er so not being able to do anything to honour his Dad, who I adored, or help Simon was a massive blow. My insecurities came to the fore and I know I was more critical than supportive of him at times. I will never be able to make it up to him.and hope that one day he will realise I did love him.

June came along and the good weather. I started to be able to sit in the garden and have short walks. I then went to see Stevie Wonder in concert on Clapham Common and ended up back at square one.

My heartburn also got worse and I ended up on long term medication waiting for an endoscopy.

The summer was pretty miserable and my relationship has been tested to the core.

October this year is my turning point. I am determined and there is a shift. I got my referral the CFS clinic and have started CBT. I have only had 2 sessions but he has taught me to let go of the fear and more importantly my perfectionism. I am a good person deep down, and these symptoms might never go, but I can learn to live with them.

My endoscopy shows that I have a hiatus hernia. But oddly since the day of the procedure the heartburn has lessened and I have taken the bull by the horns and am moving back to eating properly. I love vegetables - something i never thought I would say!

I have been for kinesiology, an alternative therapy I very strongly believe in. I am taking some natural supplements which my body asked for, and my energy levels are rising.

I now get out of bed every day and get dressed. I am out of bed all day, and go for a walk every day. I even went to the shops this week and went out with Simon to visit his Mum.

I know I have a long road ahead, but for the first time I am not afraid. What will be will be. I am not going to strive for perfection, I am looking to be happy. Who knows what that looks like now. I am looking forward to finding out.


Thank you

I dont think I would be sitting here today typing this if it wasnt for some very special people.

First and foremost my Parents. Their love and support has been unwavering. They have done so much for me that I will never be able to repay. I love them with all my heart.

Simon. Thank you for not giving up on me, even when others said you should. I know it would have been easy to walk away, and I know I am not good at listening and taking advice but I love you and know you have always had my best interests at heart. I will be a proper girlfriend you can be proud of again one day I promise

My daughter. You have your own battles but you have been patient with me when I have been a crap Mum. I will always love you and will make it all up to you.

My family and friends. Thank you. You have no idea how much your support has lifted me and meant to me. I cant wait to see you again soon.

Book bloggers and authors deserve a special mention. You gave me hope, a purpose and many laughs over this time. I would find things alot harder without your kindness. It is a fantastic community and I love being a part of it.

Fellow spoonies: wow guys. You are all amazing and such an inspiration. Thanks for all the advice, listening to my rants, and for the humour that makes the day bearable. Special shout out to Sian, Charlotte and Anna. You are awesome princesses!!




I really hope anyone still reading has found this useful. Please never give up hope or feel alone. If I can ever do anything to help let me know. life can be lonely without friends and I am glad to have you

Take care

Jill xx

Invisible Illness Week - My experience of chronic illness

Hello....how apt that this week is invisible illness awareness week. This week also marks 1 year since I first went to my GP complaining about feeling 'out of sorts' and my battle with invisible illness began. An illness which still, a year on, has no medical diagnosis, and no treatment plan.

I am sure some of you may be saying...oh no! Here comes another moaning rant from Jill...all me me me. Feel free to stop reading right now :-)

If you are still reading...poor you haha, and thanks. I hope that anyone suffering from a chronic illness might find some reassurance that you're not alone, and there are people that understand. I hope that anyone reading might come away understanding a bit better what its like to go through an invisible illness. I don't have an 'official' diagnosis as yet, but Chronic Fatigue Syndrome (CFS) was informally diagnosed late last year, and as tests rule other conditions out it is becoming more and more likely.

Everyones story is different but, whatever the illness, and whatever someone's circumstance, the one thing I can guarantee you that we all have in common is that not a single one of us wants to be ill, and will do anything it takes to get better.

It's never easy being ill, especially when on the outside you don't look it. If I had a cold, a broken leg, or a medical diagnosis it would be far easier for people to get their heads around it, and for some to believe me that I am not just making it all up.

We never really tend to think about those suffering from conditions such as ME, CFS, Fibromyalgia, Crohn's, anxiety, bipolar, depression, diabetes, lupus, arthritis, cancer, heart disease, epilepsy, autism, migraines....the list goes on, unless we know someone who has one of them. The debilitating nature of the illness varies from person to person, and often changes from day to day, if not hour to hour. It is hard for the person with the illness to get their heads around it, so I can understand why it can be so hard for those supporting them to do so.

Who was Jill?

Just a short twelve months ago Jill was unstoppable! A workaholic who often worked 50 plus hours a week. I was Chair of the Lambeth branch of Cruse bereavement care, running it on a day to day basis which took over 15 hours a week. I went to watch AFC Wimbledon up and down the country. I went to the cinema all the time, ate out lots, shoppe more than I should. i regularly went to concerts and took holidays. I was a Mum to a 19 year old daughter and a girlfriend and daughter myself. I literally didn't stop and had transformed from a shy, introverted person into a far more confident, outgoing and happy woman.

My only experience of being ill was in my twenties when I suffered from agoraphobia for 3 years. I had always been an anxious person and I think a mixture of things culminated in me becoming overwhelmed, and shutting down to recover. And recover I did. It was bloody hard work, and took lots of fight, determination, and strength, but overcome it I did, and life went from strength to strength. Perhaps one day I will tell that story, if it would be helpful.

I can honestly say that in all my years (all 42 of them), my total number of visits to the  doctors could be counted in single figures, and they had been for one off events such as pregnancy, dodgy smear test results and an aspirin allergy. I could do with losing some weight, but other than that I was healthy and happy.


How did I become ill?

Hindsight is a great thing, and looking back now I can see the signs of how I began to slowly come apart at the seams. Exhaustion out of the blue, struggling to carry on and having to put a smile on my face and dig deep when I just wanted to stop.

I find it hard to believe that this week 12 months ago I first went to my GP to talk to him about how 'I just don't feel right'. I was struggling to have the energy to work through the day, wishing for it to end so I could clamber in to bed. I felt run down and ill all the time, like I was fighting something off.

I had never felt back to normal after having my first dose of proper flu in January, but had thrown myself full throttle back into a manic working and social life. I wanted to slow down, but felt under pressure from all angles to keep going.

I knew I had a week off at the start of October, that's what kept me going. I had no idea that when I did stop exactly what would happen to me...if I did I would never ever have had that week off. That is the week I feel I lost my life as I knew it.

I will never forget 1st October 2013 until the day I die. Even thinking about it now almost overwhelms me with sadness and emotion. I went to the walk in clinic as I felt so awful and was given antibiotics 'as a precaution'. My GP had sent me for all sorts of blood tests, all of which had come back as normal, and so they presumed I must be fighting a virus. I don't react well to antibiotics so took to bed feeling rough as hell.

I haven't really spent much time out of bed since......

My body literally felt like it was shutting down. I became progressively unable to function. I have never been so scared in all my life and became so terrified that I must be seriously ill that I was up and down to A&E on many occasions.

At the same time my Doctors were baffled. More and more blood tests were taken and I was clinging on to any thread I could to try and solve why I honestly felt like I was dying. My vitamin B12 levels were low - could this be the answer? No. My cortisol levels are too high, could I have Cushings? No! Back to square one each time.

What has astounded me most is the medical attitude towards patients. I have had a real mixture. Some have been amazing, really listened, and have worked to try and find out the cause. There have been a few who have shown no interest, have categorically told me that I am making up the symptoms I am describing, and am merely suffering from stress and anxiety. Well, yes, 12 months on, I am increasingly stressed and anxious about wanting to know what is wrong with me. But please trust me when I say that these feelings are totally different. I am not imagining them!!


What does if feel like?

Every day of my life has become a battle. I have become less scared of the symptoms now, and know that, in time they will pass. I have had so many various symptoms that to list them would take all day. My main daily battles are the following:

Feeling spaced out, like I am in a bubble and never quite present. My mind never feels sharp, it's always hazy and fuzzy. Sometimes it feels like I am drunk but without any alcohol. I feel constantly woozy and dizzy and find it hard to concentrate, even on conversations.

My vision is blurry and I suffer from bad tinnitus, particularly in the evenings. I feel like I am walking on rubber, or on bubble wrap and I often feel incredibly faint if I stand up or try to walk.

I feel exhausted in a way that is hard to describe. It's like having constant jet lag, struggling to keep my eyes open, and every step is like wading through treacle it is such an effort. At the same time I have had severe bouts of insomnia, and until the last couple of weeks I slept on average 4 hours a night, sometimes as little as 90 minutes. I still have broken fitful sleep but can manage about 6 hours now, often then napping for a couple of hours longer to try and feel human for the day ahead.

At my worst I couldn't abide any lights on, and would wear sunglasses in the house to be able to get to the bathroom etc. I still carry them around with me as I know light sensitivity really disorientates me. I am also incredibly sensitive to noise. I often struggle even with people having conversations around me. I can hear noises that no one else can, and they distress me. I believe some of this may now come from being isolated in my room for so long.

My stomach is in bits! I cannot tolerate lots of foods, and suffer from continual acid reflux. I live pretty much on gluten free bread, lactose free milk, boiled rice and roast chicken....very dull! I am starting to slowly experiment and it's hit and miss! I am sick e erg morning for the last year, and have developed a chronic cough where acid is constantly burning my throat and lungs......only been waiting 4 months for my referral to Gastro, lost it twice and shut it down mistakenly 3 times now!!!!

I have gained alot of weight and am conscious of its affect on my health, both short and long term, as well as my fitness and the way that I look to others. It's not nice!

So,those are my main symptoms. I battle them every day with varying levels of success.

At my worst I cant get washed or dressed, I cant get downstairs and am totally captive in my room. I am like a zombie just willing the hours to pass and to get through the day intact.

I can see a big improvement in me the last couple of weeks. I am able to get washed and dressed everyday. I have been able to spend some time in the garden, prepare some food. Sit in the living room, and have even been for some short walks. I am adamant I will not relapse again. So this week I have only been spending about 22 hours a day in my room......what a great feeling that is.

I am not going to say anything about what that does to you as an individual, to go from such a go getter to a hermit living in one room. I will allow you to draw your own conclusions.

Reaction from others

One thing this has definitely done is shown me who my friends are. I haven't seen anyone in person, other than my family and my boyfriend in a year. I have become totally invisible which is ironic when it is classes as an invisible illness. However, I am not alone. I know there are friends who are there for me and I can call on them at any time. I cannot begin to tell you how much that means to me. I will never ever forget them and will never be able to repay them for their kind words, support and friendship. I just hope I can be half as good to them if they ever need me. The power of a random text, or message on t'internet saying hello, or just catching up on whats happening in the world is so powerful and welcome.

I would be lying if I said that it is all positive. I am sure anyone with an invisible illness will agree that you do get shocks from the way some people react. It must be weird to them for someone to go from 'normal' to a totally different person. Some have gone silent and just disappeared, which Is understandable. Other have had opinions on what they think is wrong with me. A few have tried to tell me that it is all in my head and that it is 'just' anxiety or depression. It infuriates me when I am told that. For one, I know what anxiety is, and if it was anxiety, trust me I would be acting on it. But equally, I hate the term 'just'. Anyone who has ever suffered anxiety will appreciate how debilitating it is, and how hard it is to conquer. I never want to see anxiety sufferers belittled in such a way.

I have had some horrible things said to me. One person told me a couple of months ago that 'I am a psycho who should be sectioned', 'I am just lazy and no normal person would just to their bed for 8 months', and the best one 'it would be better for others if I were dead'.  I haven't spoken to that person since, and they haven't felt the need to apologise. The reason I mention these comments isn't just to bitch, but to highlight how damaging such comments can be. If I were a normal fit and healthy person I am sure that I would have brushed them off. But being stuck in a room, feeling as awful about myself as I do, that has impacted on me and each time I have a bad day I think that they are right. I feel like a failure that people who I thought knew me would think that of me. I can only think and hope that it was frustration and ignorance rather then their true feelings.

In the last week I have realised that whilst I don't want to let people down, they have to think of me what they choose. I cannot let negativity into me now. I need to focus on recovering and getting out and meeting people who make me feel happy, and I hopefully make them feel happy too. It's hard enough thinking badly of yourself without surrounding yourself with negativity too. Letting go of others thoughts has really empowered me and I already feel stronger and better about myself.

My biggest revelation has been the power of social media. If I didn't have Facebook and Twitter I don't know what I would do. Facebook has allowed me to stay connected with friends who have given me such amazing support, and laughs too. Twitter has opened up my world. I have discovered book blogging thanks to it and I adore the book blogging community. I have also come across the spoonie community,  particularly fellow ME/CFS sufferers. They have made me feel less alone, totally supported and understood. I not feel so alone and scared anymore.

Thank you to every person who has helped me. Even a hello helps more than you will ever know.

Effect on relationships

What would I do without my parents? Honestly, I will never be able to repay them for all that they have done for me over the last year. I love them with all my heart. They have done all my cooking, cleaning, washing, shopping as well as giving me support. It must be so worrying for them to see me like this too.

My relationship with my daughter is what scares me the most. I have not been able to be a Mum to her and I will never get that time back. I hope she realises how much I love her and just how much I am going to fight to get better so I can make it up to her. She herself has had agoraphobia since early teens and I need to be there to help her overcome her battles too.

My boyfriend and I have been together for almost 11 years and my illness has had the biggest impact on our relationship. it has given us massive ups and downs. He has supported me the best he can but doesnt know what to do for the best. He is away working for a few days each week and then comes home to me stuck in bed. I can only imagine how frustrating and boring that must be for him. I try to conserve my energy and good days for when he is around, but even that means watching a DVD or tv. We can't even sit in the dining room and share a meal together. I also take out most of my frustrations and moaning about how I am feeling out on him. its not intentional, but it always slips out. He has had a tough year and has lost his Dad in the last few months. That, along with having to put up with all the uncertainty about what is wrong with me is totally unfair on him. It has been a total role reversal too as I am usually the one giving the support, and never asking or any in return so we are on new territory.

I know I have become a different person since I got ill. I was always the giver who always focused on others and never leant on anyone for support. This role reversal is very hard for me, and others to come to terms with. It's not something that sits comfortably with me. I had become self obsessed and worry constantly about my health. I am trying so hard to stop this but it is bloody hard.


What's next?

Who knows! What I do know is that I will never stop battling to overcome this illness. As time passes I am becoming braver. I recognise the symptoms and through trial and error I am learning what is good and bad for me. I have more medical tests to undergo but I am not going to be scared of how I feel anymore. If I can let go of the fear I hope it will make me stronger.

I am going to try and change back to some of the qualities I had before. I am not perfect and will falter, but I am going to start to take more of an interest in others. I love other people and want to get involved in the real world again. Also, by doing that it will hopefully distract from me and my brain will start to work again.

I have started to meditate. It is already feeling good. I have loved it in the past and am going to keep practicing. I hold alot of frustration, anger and fear and this is a good form of letting it flow over me. I hope it will make me a nicer, more relaxed person to be around, and I might even laugh more too!

I hope me telling my story has been interesting. It has been therapeutic to write it, but more importantly if I can help even one person feel less alone, or scared about their illness, and helped even one person to partially understand what it is like to be chronically ill then I will be a happy bunny.

I am not going to lie - it is not easy. I am still in early days of illness compared to some 'veterans' and will never claim that I know it all. What I do know is that if we stick together and help eachother we can be stronger. I promise to always be there for anyone who needs a bit of a pick me up.

I want to be a good, non judgemental, caring, loving, understanding and nice person to be around. I will get there and being ill will make me a better person in the long term with others.

If anyone wants to contact me fdo email me jillstratton88@gmail.com or come join me on twitter @jillstratton

There is a website for invisible illness awareness week here

Action for ME have been brilliant for support and their website is here

Invest in ME website is here


Take care all and no matter what....smile...people will wonder what you've been up to!

Jill

My health woes

(Taken from my book blog jilllovestoread.blogspot.co.uk)

Hi all

This has been purely a book blog since I started in Feb and my intention is to keep it so. However, I hope you will indulge me in going off topic for once whilst I talk about my illness as I feel the need to offload and reflect.

Anyone who knew me a year ago would not recognise the person I am today, me included.  I don't know what happened to the old me. The person who worked 40+ hours a week, volunteered in my spare time for a bereavement charity, went to watch football, went out eating and to the cinema at least once a week, and was generally always on the go. I miss that person.

This illness has taken so much away from me. I am ashamed of the person I have become. I have become a recluse,  lost contact with my friends, become unable to work, lost my independence, put on weight and lost my pride and love of life. I have forgotten what it feels like to be 'normal', to feel happy, and to truly laugh.

In August last year I got a cold that just wouldn't clear up. I felt exhausted all the time and started doing something I never did, come home from work, take my dinner upstairs and went to bed. By the start of Sept, whilst still working I had stopped going to football and didn't even have the energy to go out with my Father in Law for his birthday dinner. I went back to the GP and they sent me for blood tests. I struggled through my daughters birthday and had a week off at the end of September.

By October I simply couldn't carry on. I took antibiotics (just in case the Doc told me) and that was it. Slowly between then an Christmas I simply shut down. I remember going into the office and the noises hurt my ears, I couldn't see properly, I felt so exhausted I thought I was going to pass out, and every part of me hurt with indescribable pain. Work have been great and I started working from home. This was ok for a bit, but even that proved impossible. I was sick every morning, constantly dizzy and feeling like even sitting up I was going to pass out. I ended up a recluse in my bed. Ironically with all my tiredness i was only able to sleep for 2 - 4 hours a night. On Christmas Day I spent 4 hours out of bed, and that killed me for days to come.

My typical day by the new year was to

Wake up and feel totally spaced out. I couldn't focus, my body hurt and I had no energy.
Struggle for up to half an hour to get to the toilet
Lie in bed all day watching tv
By 4pm I couldn't bear the light and noise so would often just lie in silence and dark for a while
Eat dinner with a struggle as I didn't have the energy to lift a fork
Spend the evening in bed with no light on, using sunglasses to help me face the light to get to the bathroom
Unable to have a phone conversation as the noise was unbearable
Double / triple vision
Constant unbearable ringing in my ears

I am ashamed to admit it but I often went well over a week without being able to have a wash or wash my hair. I just didn't have the energy, and if I did, that would wipe me out for a couple of days after.

This continued up until the start of April. Not even able to sit in a room and spend time with my daughter. My poor boyfriend spending his time here lying often in a dark room with a tv for company, and me being totally dependent on my mum for everything. I couldn't even get downstairs to get a drink myself.

By March I was beyond despair. I had heard of the lightning process and so contacted a practitioner and signed up. From 1 - 3 April I did something I didn't believe was possible, I attended the sessions. That meant 3 days out of the house, concentrating and learning. It was tough but I did it. Even leaving the session each day and going over to the coffee shop for a short stop.

April became a small turning point. That same week my boyfriends father became seriously ill and was in hospital. I hadn't seen him for 6 months but on the Saturday I went to the hospital and stayed with him for 45 minutes. Ok, so I got a cab there and back, but to be able to to do it felt like a massive achievement and to me, caring about him as much as I do, he was worth the effort. Sadly he passed away that night but where that would have knocked me for six, I was able to go to the family home and spend the day there.

I realised that:

My double vision had gone
The ringing in my ears had gotten better
I had the energy to be out of bed
I went for a couple of walks
I was able to start bathing more
I managed to get to the funeral

May wasn't as positive. Whilst the double vision and ringing in the ears were still gone, I was on strong medication and spent most of May in bed dirty and smelly. However, I have only realised that I no longer needed to switch lights off in the evening.

We are now into June and almost a year has passed. This time last year I was in Ireland at my cousins wedding, then out all the time in the UK. I miss that person and I want her back. I am willing to fight and do everything I can to get her back.

Since the start of June I have done the following:

Had a bath every day
Washed my hair every other day
I have been able to go downstairs every day
For the last 11 days I have been able to sit out in the garden for a few hours at a time
Last week I went to the supermarket and shopped. I felt so weak but I did it
I have been able to start cleaning my hell hole of a room a bit a day
I have cooked for myself 4 times in the last week
I went for walks (not far admittedly) 3 times last week
I am able to sit in my living room without the noises and colours being too much. I even managed to have the tv on in there
I am sleeping sometimes up to 6 hours a night
I can make a cup of tea for myself
I can sit with the light on in the evening
I don't have double vision or ears ringing
I can go up and downstairs regularly

These things may seem simple and stupid to you all, but to me they are glimpses of hope. I don't expect people to understand as they are things that we do everyday and take for granted, but to me they are massive. Perhaps I am being deluded and that they aren't really improvements. But yesterday I even started putting together a bookcase, there is noway I could have even contemplated it a week ago.

I am hoping and praying that these are signs that I am healing and recovery will happen. I don't want to be dependent on my Mum and to be a burden to everyone. I understand their anger and frustration but it is nothing to how I feel, believe me. I just wear my mask well. I don't want to be ashamed of how I look with no hair coloured, overweight and lifeless. I want to be happy and a nice person to be around.

I am truly sorry to those I love who had to witness my demise and I promise I am doing everything I can to get better and make it up to you. I want to make you proud of me.

Thank goodness for books and twitter is all I can say ;-)

I am sorry for the outburst. I just needed to get it off my chest....normal book service shall now be resumed ;-)