I know I have talked about this before but I truly think it is something that needs talking about again. So today let’s talk about Appointments.
In case you didn’t know this is my situation, I have Severe Myalgic Encephalomyelitis . I also have Endometriosis, my treatments have included a Medical Menopause and on my last report it talks about a large cyst but I haven’t seen anyone to talk about this more. In addition to that I also have problems with my Liver which keeps showing up in blood results as raised ALTs, my consultant several years ago said that it was Fatty Liver but I haven’t seen him since. In my hands I have De Quervains Syndrome , which makes it difficult to control my hands it is due to the narrowing of something that needs to be wider ( sorry bad day so not getting a lot right ). I was told in 2016 or 2017 that I needed an urgent colonoscopy, I still suffer with what ever is going on with my insides which range from severe pain on the left side just above my hip but under my ribs. Add to that I have needed root canal doing on a tooth for the past 2 years, the whole of the back of my tooth has disappeared so there is just a large hole , this is causing me severe pain right now and I can feel the pain all the way up to my eyebrow.
Why am I telling you all of this ? As you can see I am severely ill the Myalgic Encephalomyelitis has me completely bedridden , any movement I make doesn’t just hurt to do it , it will also hurt me or punish me in the next day or 2 . Unfortunately this is common to Myalgic Encephalomyelitis sufferers and is why we are trying to have graded exercise therapy taken off the guidance for Drs ( I really can’t think of who this guidance is prepared and distributed by )
Myalgic Encephalomyelitis has different levels of pain , I can wake up today and go the 8 steps to my bathroom upright using the bed frame and the wall for support , another day or time I won’t be able to do that without the help of my Husband or the use of my crutches or some days I will need to move along the floor like a slug ( sorry for that reference but it is probably the most accurate.
Since Our Daughter has moved out to go to University things are a lot harder and are taking some getting used to. Right now I am finding it difficult to even press a button on the IPad propped up in front of me, I can’t eat as it takes too much out of me, yes the movement of spoon or fork to mouth and chewing is too much for me , so when Graham leaves for work I spend almost all of that time completely out of it or may as well be completely out of it . Luckily Rebecca still comes home most weekends but from the time she gets here until the time she leaves I am almost completely out of it. My family spends time looking after me or working / at university.
I can’t really describe the Myalgic Encephalomyelitis as just tiredness as it is more than that. If I am in bed then I have to find a comfortable position , any and all time not in that position is very painful. So I find the way to lay that has the least strain or pain on my body. This will then allow me to watch some tv on my iPad which is in front of me . If I move from this position the pain will be unbearable, don’t get me wrong the position I get myself into will still be painful , just not as painful as any other. When I have done too much the pain gets worse. If I watched tv I will have to turn it off as the pain on my eyes or the sound will get unbearable. If I have even too bad to watch tv and I have just lay there I will have to after a period of time put on sunglasses or an eye mask , if the noise gets too much then I will need to wear noise cancelling headphones. The falling asleep isn’t falling asleep it is sometime like waking up and being shocked as you were not sleepy others it is like passing out as the pain got too bad.
So getting back to the subject above , if I need to see my GP they will come out to me as I am unable to get to the surgery, if I need blood taking they come out and take that too. Since the beginning of 2020 I have left the house once which was for a Dental appointment at that appointment another appointment was made for me to have the root canal doing but unfortunately on that day I was too ill to make it , not just from the Myalgic Encephalomyelitis but also vomiting because I was so scared of the appointment.
Unfortunately Myalgic Encephalomyelitis does not play well with other Appointments.
This happens a lot , just think about that. I am completely bedridden for 95% of the time , that 5% isn’t spent going out dancing or painting the town red . If I have a relatively good hour or 2 I spend that in another room than my bed to watch tv.
The NHS have a system where if you do not attend the appointment they set for you they take that as strike one , most of these appointments are generated and sent out by post. I do not have any input or ability to say that I have someone with me that day to take me to that appointment, so if I call up and ask for a different date but then I can not attend that appointment as it falls into my 95% of the time , well then I am taken off the books.
If I need to make a date for my teeth it’s my Dentist obviously but I also have a consultant about my stomach problems, my gynaecologist for my endometriosis , a consultant for my Liver, A physiotherapist for my hand and either someone from the team at The Royal or my GP for my Myalgic Encephalomyelitis .
It works by firstly seeing my GP who will then write to ask for an appointment from another consultant . Your first appointment is normally to sit down and talk about your symptoms , sometimes then I will have blood taken and will be given another appointment or need a scan doing . That’s so far roughly 4 appointments and I am not even on any sort of conclusion or treatment plan.
How is someone like me supposed to be able to attend all of that or have someone available to take me to all of those appointments when I have a Daughter living away from home and a Husband who works full time ?
Let’s break it down –
- Seeing my GP
- Sit down to talk about why I am here
- Blood tests
- Scans
- Appointment to discuss findings
- Treatment plan or possibly investigations
- Surgery Investigations need pre med / height / weight / swabs taken
If I look logically at my body as a whole I know that I need a colonoscopy and not to be a prude , I do not want anything going near that part of my body while I am in the land of the living. I have asked them repeatedly to put me under as I have panic attacks from the thought of that. I know that my Endometriosis has reached another peak and is causing my problems , when it was like this last time they put me under and took away what they could.
Why in 2020 cant the health profession start looking at a patient as a whole , it would save money , time and allow people like me to have a higher chance of being treated. If I can’t get to my own bathroom then how can I attend 5 appointments to sit down and talk about what is going on, I can’t have 5 additional blood tests or scans, add to that an appointment to go over what they find and all of those appointments still don’t have me being treated.
I get it , I really do. If I don’t attend a medical appointment of any type that I cost the NHS money but The NHS wasn’t set up for the healthy patient it is there to treat the sick yet what is the solution for a patient like me ? Why in 2020 is the NHS not looking at me as a whole entity not just individual problems if I have 5% there or thereabouts good days in a year , that is what 18 days !! Even then most good days for me are spent doing things like this , yet all I am managing to do is dictate to my IPAD what I want to write. I’m not able to go downstairs to eat or leave the house , so how am I supposed to get to the hospital or a Dental appointment.
As I have not been able to attend 6 appointments in the 12 years that I have been a patient my dentist will no longer see me . I do understand the point but my health is not in my control. If I could leave my house I would be doing it for attending family events or taking a holiday , going out for a meal with my Husband or having a date night .
What about you ? Does you health service work for you ? What would you change ? Do you have a solution ?
I really would love to hear your thoughts on this 🥰