I am getting increasingly frustrated with not being heard.
I have a good doctor but there is one symptom of mine that whenever I bring it up is not acknowledged or I feel is disbelieved. Everything else I discuss with him is accepted as part of my condition yet this simple seven letter word is just left hanging in space and I am fed up with going over the same old ground in an effort to be heard and acknowledged.
This symptom isn’t anything crazy it is well documented as part of Ehlers Danlos Syndrome and Dysautonomia but it is dismissed out of hand whenever I dare raise the subject. All I am trying to discuss is the bone crushing level of fatigue I suffer from after leaving the house for medical appointments or for any other reason.
On leaving the house I am hit with fatigue, its been going on for seven years. A medical appointment can leave me in bed for hours if I am lucky and most of the time days. It’s not just the fatigue that is an issue but also it makes all my symptoms worse. I have increased pain due to the Ehlers Danlos Syndrome and the Dysautonomia makes my autonomic nervous system go screwy. A simple 20 minute appointment can leaving me feeling like I have been run over by a car and I simply don’t bounce back.
Most medical professionals that I try to discuss this with either pretend that they haven’t heard me by changing the subject or make me feel like I am exaggerating my symptoms. Let me tell you now I am not making this stuff up! If I could go out everyday I would, I don’t choose to be a prisoner in my own home, my body is making me that. I don’t mind suffering the consequences of the punishment my body will dole out if I am having a good time however medical appointments are not on my list of fun things to do. I would rather spend my energy actually having a life and doing normal things. The only way I can do this is to stick to a strict routine in a controlled environment where my senses are not over stimulated and my frayed autonomic nervous system doesn’t feel like it’s under attack.
Also I find that doctors do not calculate into the equation, travelling times to appointments. My doctor wants me to go to the next town to have physiotherapy on the NHS. What he has failed to appreciate is that on a good day that is a 20 minute journey each way with a 30 minute appointment. The physiotherapist will want me to attend once or twice a week. That’s lovely but my body disagrees. If I go just once a week it will take me the rest of the week to recover, going twice a week means my body doesn’t recover and it sends me on a downwards spiral where I become so ill I can’t get out of bed for months. The doctor and the physiotherapist can not understand my sudden deterioration, I then have to end the physiotherapy because I am too sick to attend.
How do I know this will happen? Because I have done this before. I tried to play the game and attend the twice weekly physiotherapy sessions. I ended up in a worse condition than I was before I attended. It’s not just the travelling and the appointment that is the issue. If you end up with a physiotherapist that can’t get their heads around the autonomic issues and demands you increase your walking by 10% each week you are on a hiding to nothing. It doesn’t matter how much you tell them about your condition they just don’t hear you. It begins to feel like they think you like using a wheelchair etc. You aren’t then just using energy travelling and attending the appointment you are wasting energy on a person who refuses to listen to you. If they can’t understand the danger with getting someone who has orthostatic intolerance or faints without warning to increase the length of time they spend walking then what’s the point? I am thoroughly sick of it.
When I explained to my doctor that the physiotherapy was making me worse I felt ignored. I was told that I was just going through a rough patch and once through it I could start again. I never emerged from that rough patch and my conditions steadily got worse.
Dont get me wrong I like my doctor there are many things that we see eye to eye on and he is my go to guy. He just fails to appreciate the havoc my body creates when made to leave my home. He didn’t get it when I had to have 6 vitamin B12 injections over two weeks, that this would put me in bed for days. I asked if the District Nurse could come and do them I was told that as I was not strictly housebound that I would have to go to the surgery. I understand that the District Nurses are extremely busy and have many patients to see but this meant for the whole two weeks I rarely left my bed. The nurses I saw at the surgery could see with each session my health was deteriorating and were furious. I couldn’t understand either why I was not being allowed to self inject when I already inject octreotide (a far more dangerous drug that vitamin B12) everyday. It made absolutely no sense. Unfortunately its something my doctor didn’t see so obviously its just a figment of my imagination.It’s incredibly frustrating.
This situation with being disbelieved has happened again this week. I needed to ring my gp about increasing my slow release morphine on the days when my back is bad. That was no issue at all. He then asked me how I was, I explained I had seen my neurosurgeon, I read him the MRI report and then told him I had been in bed ever since the appointment (at this point it had been 24 hours and for a lot of those I had slept). I swear to god I could hear his eyes rolling!
I think some of the problem is that when I see someone and it doesn’t matter how ill I am (unless it’s a situation like in June where the temporary catheter was blocked and my bladder was in spasm) I will be bright and breezy because I am genuinely happy to be interacting with another human being other than my husband. I can go weeks without seeing anyone but him and although obviously I love him very much, it’s nice to have some social interaction. The fact that as soon as the interaction finishes I go back to bed or back to sleep is something they don’t see. I really wish they did.
Sometimes I wish I could pull off a dying swan act just so they would appreciate how sick I am but I just can’t, it’s not me. Years of dealing with colleagues and the general public has ingrained in me a “happy face” and a pleasant demeanor when dealing with people. Very few people see the real me, the days when I can’t cope with all the crap that’s being thrown my way and I just want to cry all day everyday. I know through my immense dealings with the medical profession for them to see me like that would mean they would blame it on depression and then it would be an uphill struggle to get any symptom acknowledged as it would all be blamed on that.
I am dreading starting my spinal rehabilitation physiotherapy due to the fact I don’t know if the physiotherapist is going to believe me when I tell her I can’t come every week. However at least this time the journey is only 5-10 minutes away depending on whether we get stuck behind a tractor or not. Plus this time I am paying for the treatment myself which means I get a bigger say. I am going to be printing off and taking with me medical papers on Dysautonomia and Ehlers Danlos syndrome for her to read. I hope she does otherwise I will be saying to myself yet again “can you hear me?” when the subject of my fatigue is ignored.