Saturday, 15 November 2014

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

1 comment:

  1. Such an honest and open post! I'm glad things are looking a bit better for you. You're great, never forget that :) xxx