Life truly is a roller-coaster x

I’m not feeling at all well. Full on banging headache, feeling very hot in a temperature feverish way, aching bones, pain in my nose, throat, sinuses,.. pain everywhere actually.

Having both osteoarthritis and most probably ME/CFS … that’s a long story in itself which I will come back to at a later date… means I experience pain differently to people who don’t have these conditions. I am in fact very stoic about pain, because i live with constant pain I have a high pain threshold, I do however have to take painkillers on a regular daily basis…I watch research on osteoarthritis pain management like a hawk and feel confident things will change soon. Scientists are making hugh steps in unraveling how arthritis and other inflammatory diseases progress.

If anyone tells you osteoarthritis is wear and tear… send them in my direction, I will put them right. Its so much more, for a start its a genetically linked disease, if you don’t have the genes for it, you wont get it… it’s often triggered by bone trauma, For me that happened very young cos I had a congenital bone deformity, find it difficult to talk about the horrors of having that put right so think we will park that for now…. But because I follow the research I know that scientist’s have recently discovered the protein marker for the bone deposits which goes wrong and that they believe that this is actually a precursor to the cartilage thinning… it is that thinning that leaves you without a shock absorber between the end of the bones… add to the bone growth and then you start to understand the pain! They have also discovered that the inflammatory nature of the disease is far more important in its progression. There are 5 genes that code for osteoarthritis, and interestingly one of those also codes for weight gain… that’s what you’d call a double whammy and it might make you re-think everything that you have been told and what you think you know about weight gain and arthritis.       

So anyway i’m feeling rough… In pain and a little feverish. And that has totally brought my mood down. Some of you know I work in mental health services, lots of reasons why I do that. Probably the one’s you need to know are that firstly I’m not frightened of mental illness, we all have mental well-being and some of us have better well-being than others… but it’s not static and things can go wrong for anyone at any given time. If you assume an all jack attitude, that happens to someone else and never me, i’d say be careful… it may well sneak and bite you in the arse when you aren’t looking. None of us are immune.

Another reason that I am happy to tell you, is that I am a creative problem solver, you give a problem and I can’t help but try to work a way round it… I was once told in clinical supervision that I am observed with problems where my approach will be to work out how to go over, under, around a problem and if that fails I will blast it out of the way…. this wasn’t a criticism.. its a true and accurate observation of how I am. it got a bit lost over the last few years when life events swallowed me whole… but as I’ve said before I am feeling a lot better now and its all coming back.

The other thing that I will share is I know mood changes, I know depression, I know deep dark depression, the sort that stops from getting out of bed, from being contact with others, from shopping and completing activities of daily living. there’s my training…of eating, of putting make up on, of taking pleasure from music, art, books, films, the company of others in its many forms… you can make of that what you want. I found myself in that place after a nasty Epstein Barr virus illness, an illness that completely floored me for 3 weeks and left me in a truly terrible place afterwards…..  this is what we now think is the beginning of ME/CFS for me, it’s  still be confirmed but as my clinical lead said to me recently ‘self diagnosis Debi, its what everyone else does’…. my GP has said ‘it looks like a good fit’ … it would explain an awful lot… but again that’s a long story in itself and can wait for another day.

So I fought a hard battle to get better from that dark place. It tool several years and I have worked very hard to maintain my mental well being since. I’ve been through some terrible stuff and I’ve stayed strong. I’ve brought a child up on my own and look this week what a Consultant paediatrician said …he asked my 16 year old son who has a diagnosis of ME/CFS and who has been so unbelievably unwell how he had done in his GCSE’s… young son missed all of year 10 as he was too unwell to attend school and his school were unbelievably bad a t dealing with the problem… but he was eventually referred to the Health Needs School and has been tutored for up to 2 hours each day at home for year 11. So son said he had done okay, got a couple… didn’t elaborate. So I volunteered to information that he had passed maths and had got a B for Biology, a A for Physics and an A* for Chemistry, giving him an overall grade A for Science. that truly is an achievement.  The Consultant beamed and lent forward and shook young son’s hand, he said all power to you, that’s a real achievement and there’s a nod there to your mum. It was actually quite understated but extraordinarily powerful.

I discussed the fact that my GP is looking into the possibility that I have also had ME/CFS for more than 20 years, that I have been able to bring young son alone, that I have competed a Science HND and an Occupational Therapy (Honours) degree during that time. That’s not to sing my own trumpet, its to let young son know that all things are achievable, one way or another. That’s a clear don’t give up message. Life will probably knock you down, the getting back up and what you then do that matters in the long run. The Consultant is apparently married to an OT and he sang our professions praises… I kind of liked that… but that’s me. He was also very clear its not a psychiatric illness, its a an illness with a biological basis and I’ve been reading a lot on ME/CFS and current research and I believe this wholeheartedly and I will be dismissive of anyone who attempts to tell me otherwise.

So lets be honest the last couple of years have been extremely difficult… all areas of my life have hard… in simple terms, work, rest and play have all been affected. I don’t hide the fact that I had a breakdown at the end of 2011, 2012 I felt like I was underwater the whole time, I functioned but I wasn’t really with you. At the beginning of this year I could see I was heading for a second breakdown… it scared the crap out of me, if it happens again it will likely be worse and the first was enough thanks. So I’m determined not to go there. I was signed off for a while and I had some specific therapy whilst I had breathing space. Stepped away from the abyss and have been fighting to keep my sanity since. Not going into specifics about that at this moment in time.

I’m in a much better place now, but I know that I’m still very vulnerable. Stepping away from recent traumatic events has caused me psychological issues… but I’m dealing with these, i’m having some more therapy, which won’t need to go on forever, I’m very reflective and psychologically minded and I can bend and alter my behavior…. oh apart form the problem I have with being seen as weak and needy…. but this, writing like this is my way of trying to change that! I know that I have a tendency to over-think things… it causes me problems and that’s partly what I’m using this for.  

So my moods can still change very quickly…..they are generally more stable now… but what’s I’ve just discovered is that stress still has an effect on my physical health and physical illness has a profound effect on my mental well being.  So I’m feeling rather physically unwell and I’m struggling emotionally. And I’m telling you. That’s a big deal for me. If I’m choosing to share any of this with you on a one to one basis you are actually honoured cos I don’t trust people very much.  Why? Because I’m a sensitive person, don’t actually want to change that, there are lots of good things about that… but life has taught me that people will chew you up and spit you out, they shit on you from great heights.

I’m a fairly open person but I’m not an open book, there’s plenty you don’t know, cos I run deep. But what I do know and what I’m sharing is that I’m working hard to stop this happening to me any more, because I understand I have control of my own emotions. If people choose to behave badly around me, it’s their issue and it’s not necessarily anything to do with me, I just happen to be there. I’m not responsible for how other people choose to behave…but I am responsible for how I react. Difficult at the moment cos of where i am mentally but be assured I am an extremely strong and capable person and I will weather all storms and I always come out more informed and stronger. I will live to fight another day.

  On a final note several people over the last few years have asked me how they and I have got ourselves into bad situation, my response has always been it can happen to anyone, predatory damaged individuals can cause problems for the strongest of people because everyone has an Achilles heel ( http://en.wikipedia.org/wiki/Achilles’_heel ) and people have said you like me have been through loads of bad stuff and we didn’t break, why now? My answer? Everyone has a breaking point.

And you know what I’m stronger for knowing where my breaking point is. And I’m holding onto that. And as I said I will always be ready to fight another day.

If you are my friend, my true friend I want you to know, that I know who I can trust. That I am careful with who I trust. All I ask that you don’t misuse that trust. Because once its gone, its gone.  

Right I feel a bit better for that… physical illness appears to have become a bit cathartic. Going to rest now… will probably sleep now. So as ever… Peace and Love xxx 

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