Back to May 2015 and I am still in immense pain with a number of other symptoms to boot with no real help or advice from my GP.
It got to a point where enough was enough. My family could not sit back and watch me suffer any longer. The family member who put me in contact with a lady who had M.E. is Jane, who I will forever grateful to. Jane told me I needed to see a Rheumatologist as that was the only way I would be able to move forward with what was happening to me.
It became apparent at that time and even more glaringly obvious since how uneducated and inexperienced the NHS are with regards to M.E. I will go on to that in a future blog as it will take up far too much of this story!
Due to the fact that I was in constant pain, could not look after myself, could not undertake even the simplest of daily tasks and the fact that my head felt bruised from banging it against the proverbial brick wall that is the NHS, we decided to look into seeing a Rheumatologist privately.
It is really tricky to describe exactly what I was dealing with to people who have not had the experience of M.E. It really is 24/7, the symptoms vary in degrees of severity but it is there all day, every day. My good day is not the same as your good day. The symptoms change all the time and what I have now I may not have in the future but I may have different symptoms. My symptoms now are a lost worse than they were four years ago. My pain is not the same as yours which I will try and explain again in another blog.
My husband came with me to the appointment with the Rheumatologist which was held at a private hospital. At this point, a mere five months into the illness, I was struggling to even keep myself upright, I couldn’t drive or be aware enough to anything going on around me. After various physical tests and noting all of my history to date the Rheumatologist diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia. Hooray you may think but sadly that was only the start. Don’t get me wrong, a diagnosis helps you to understand that firstly you are not going mad, secondly you are not dying and thirdly it adjusts your mindset as you now have an answer. However, the diagnosis is two fold, yes you know what is wrong with you but on the flip side there is very little you can do or others can do to help you and your faced with what can be a life long sentence of an illness with no cure. I felt as if I was faced with a prison sentence. My body was now subjected to this with no let up. No one could help me, no one could take away the pain and inside I felt like I was screaming, I was stuck in this cloud but fighting to get out. The Rheumatologist ordered further tests that hadn’t been done by the GP (of which I was not in the least bit surprised!) which showed that I was low in Vitamin D. Patients with M.E. commonly have a low level of Vitamin D due to the amount of time they spend inside. A high dose was then prescribed for three months to help bring my levels back up. However, again this was not straight forward! I saw the Rheumatologist on Friday 15th May 2015. I was not given this prescription until 1st July 2015! An argument was being had between the private hospital and my GP surgery as to who should prescribe the medication due to the fact that the type of drug being prescribed was not normally given out by a GP. It took them nearly two months to rectify this!
Throughout this time I was suffering but I was the one who was having to still ring the doctors, then told to ring the private hospital, then ring the doctors, back and forth like a yoyo on a weekly basis when all I wanted was a prescription that I had been told I needed! Believe me, I have had many frustrating experiences since having M.E. when it comes to the medical profession, especially the NHS. I could probably write a book there are so many of them but it is sad to think that I am not the only one. Thousands and millions of us have to fight the system to be heard every day.
I saw the Rheumatologist again privately, as he suggested after three months, and again he examined me and took details of how I was doing. I showed to have no reflexes in my ankles or knees and every time I tried to lift my legs they shook. My whole body felt like a huge bruise and the brain fog was intense. He contacted my doctor to ask them to prescribe me some anti inflammatory medication due to the amount of pain I was in.
One note on pain relief, the NHS will only prescribe :-
Paracetamol (I joke you not, I may as well not bother!), Ibuprofen (I could not have that due to previous gastritis and duodenitis), Gabapentin (another anti inflammatory that didn’t even touch my pain but makes you put on a lovely lot of extra weight!), Pregablin (an anti inflammatory that gave me awful side affects so I had to come off of them!), Amitriptyline (nope, that’s not touching the sides either – I think I need a vet!) and Tramadol (I am not allowed that due to the type of anti depression medication I am on – frustration is high now!). Zapain which is a mix of Paracetamol and Co-codamol I was already taking due to a back injury in my teens so that was all I could have.
So, all in all I was, and still am, left with Zapain which hardly takes the edge off these days as my symptoms have got more intense.
You must understand that the first few months into 2015 was a very emotional time as I was completely clueless as to what was happening to me. To go from a person who can do anything to someone who some days struggles to even get out of bed is a very big shock to the system. To be told by your doctor that they “don’t know” or “are not experienced” and then to not give any further help is soul destroying. Even a senior doctor within the practice told me once that it was pointless me speaking to him as he had no experience of M.E. and knew nothing about it! I was in absolute agony and this was the response I was given. He didn’t even suggest anyone else who I could talk to. That was the end of the conversation. Yes, tests were being carried out but in the meantime I was left to research and find things out for myself which for a person with M.E/Chronic Fatigue Syndrome is a very hard task.
So, in a nutshell that is kind of it. There are many, many more details and many things that I will cover in future posts but in the meantime I would like to thank you for reading so far. To have my illness acknowledged is a powerful thing as to the many it is indeed an invisible illness. You will not see me on my bad days and those who see me on my good ones can often judge whether this “story” I am telling is believable or not.
If you can do just one thing for a person with M.E. it is the simple task of believing them.
It is real…it is not fabricated..it is not all in the mind…
and it is definitely not someone who is just “a bit depressed”.
This illness is not for the weak – the M.E. Community are warriors and we fight every day because we have no other choice but to.
Until next time…Faith, Trust & Pixie Dust xx