Tuesday, 9 September 2014

Invisible Illness Awareness Week - My story 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!


1 comment:

  1. Struggling to know what to say Jill other than keep fighting this terrible illness, your tweets are always so bright I really enjoy reading them. I will be thinking of you ♥