So, finally, after 2 long years of feeling unwell and gradually seeing my health and ability to function decline I have been given a diagnosis. Up until recently all the doctors I saw decided stress was causing my physical symptoms due to psychological strain. I was sent for therapy and put on anti-depressants which made no difference to my physical and cognitive issues. My therapist pronounced me sane (bless her, not many others would!) and I came off the anti-depressants, which only helped in making me gain a substantial amount of weight.
The symptoms continued to worsen, the more I tried to push through the more I struggled. It started to dawn on me that perhaps I was suffering from the same illness as 2 of my daughters ~ which to be honest frightened me. Being a carer and being sick yourself is not a great mix!
Finally though, I saw a new GP at our surgery ~ she saw me through fresh eyes and listened intently to my catalogue of symptoms, treatments and worries. She trawled through my medical history whilst I was with her and noted my numerous visits all saying the same thing and wondered why nothing had been done sooner for me. I felt a huge surge of gratitude towards this wonderful doctor, who not only listened but actually heard what I was saying and understood my concerns. This is not to slate my previous GP’s, who are all lovely ~ but read our family catalogue of dramas and understandably decided stress was the reason for me being unwell ~ our lives our never dull, there will always be the odd trip to A&E or mental health issue to address among many other mini dramas that occur in our lives but I knew this was more and at one point thought I was going insane or imagining it all.
However, The Dave and my girls saw what was going on and made me realise I should keep pushing for further investigation as to why I felt so unwell and exhausted. Walking for miles with my headphones in, which I adore, has become a distant memory. Now I have to get taxi’s when once I would walk home. I find myself napping during the day but no matter how much I sleep I am still exhausted. Pains in my joints and muscles make me squirm trying to find a comfortable position. Headaches, sore eyes, swollen tender lymph glands, sore throats, light sensitivity ~ this and so much more are now part of my life. My eldest daughter, Keisha, comes over to help me with housework and ironing because I can no longer keep on top of it. Basically, it sucks!
SO, this wonderful GP sent me for pages of test (literally sheets of A4) to ensure everything had been covered. Everything has come back as normal with the exception of me being low on the old vitamin D. As she was filling in the referral form for the ME Clinic with me she noticed that being low in Vitamin D meant that I couldn’t be referred UNTIL I had been on vitamin D supplements for minimum 3 months, as apparently they could “make me better”. So form half filled in she gave it to me for safe keeping and told me to come back after three months of taking the supplements to see her. I have spent every available moment in the sun for as long as I can tolerate (my thermostat is broken, so I am either too hot or too cold, never “Just right”) ~ I have also had 3000iu of Vitamin D under the tongue daily to, but unfortunately this wasn’t a magical cure, I am still unable to function the way I would like and my life is a series of compromises right now. So, back to the GP I went and this time the form is completed and has been sent off ~ I now have to wait, who knows how long, for my appointment to come through to see the team at the ME clinic at my local hospital. I know all about the nature of ME having cared for my daughters who suffer from it for the past 6 years. However, I am hoping that being a carer with ME may mean that the clinic can offer me support which I may not otherwise be able to tap into.
It’s not the worst news I could have had, it’s not the best either, I suppose it’s all relative but at least I know the nature of this beast and so do my family ~ with 3 out of 5 of us suffering from it!
It’s been a long 2 year slog, knowing I wasn’t right to getting to this point. Ironically it’s a relief to have a diagnosis. Now it’s a case of working with what we have and doing the best we can to manage our lives and make the best of every moment. I will embrace the good days and make them count and not berate myself for the days when I am literally welded to the sofa and cannot move.
We need research into this illness, why are there so many families who have multiple members sick with it? Is it genetic or infectious? What triggers it? How can it be diagnosed sooner so sufferers can get support and help? What treatments can be found to help improve symptoms and help sufferers make the most of their lives? These are only a few questions but this is why I support Invest in ME, to explain what they do I will quote from their website
“Invest in ME (IiME) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on – funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.
Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness
We believe that the seriousness of the situation regarding ME makes it necessary for governments to provide “ring-fenced” funding for bio-medical research in to ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.
We believe governments should standardise on usage of the Canadian Criteria for diagnosis so that there is an agreed basis (noting that evolutionary improvement would be welcomed).
We believe governments need to not only endorse and adopt, but officially promote the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3, separate from the psychological illnesses classified under ICD-10-F48, in order to provide the distinction of the neurological disease.
We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness.
Our efforts are focused on setting up a UK Centre of Excellence which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).
Invest in ME have no paid staff – all work is performed for free by volunteers.
I am moving forward knowing the monster I am dealing with and won’t let him hold me back from doing things with my family, it’ll just take more organisation, planning and compromise is all.