My head is full of so many different things to write about this morning. I spent some time yesterday reading other people’s blogs and I came away with so many updates that I could make to various posts I made years ago. I know it is impossible, but I do try hard to not write about any topic I have already covered in a dedicated post. Clearly there will always be things that overlap but that is the point in writing daily, life and our opinions about it are always changing.
I woke this morning once more with a headache and the desperate need to go to the loo. I had already managed to return to sleep twice, by the time I knew that once more and my bladder would explode. It was early again, just 7:10 and I knew that I was losing more than an hours sleep, but with already having a thumping head, I also knew any more sleep wasn’t a good idea. All my life I have lived with this inability to go back to sleep once I have the knowledge that it is past 7 am. That I suppose was my mistake this morning, I looked at the clock, that knowledge was enough for me to say, bladder you win. Everything in life is always this complex mix of tiny pieces of knowledge joined together, yet we all have this habit of putting the blame on just one. That is a statement that is never truer than when it comes to our health. I for one have this habit of blaming everything on my PRMS. Granted it is the most serious of all of them, well until my COPD steps up a level it is. Yet, I rarely ever sit here thinking about could this be coming from this or that, in my head it has to be my PRMS. It wasn’t the first diagnosis, that was my Fibro and despite the fact they both affect my entire body, I have decided that my PRMS is the more major of the two, so it has to be in control. There is the most ridiculous concept I have come up with. I doubt that you will find it written anywhere that there is a hierarchy of illnesses. The idea that my Fibro doesn’t cause me pain somewhere because my PRMS got there first, or that my PRMS can muscle my Fibro out of somewhere like some kind of bully, is truly nuts. I just had this great image, of my Fibro wondering around inside me and meeting my PRMS face to face, taking a deep and reverential bow, before slowly backing away. I am not the only one who has created a hierarchy of illnesses and it is probably the place that I have picked it up from, the medical profession. In fact, without a doubt that is where I developed this beast of battling conditions, except mine is in my head, the medical profession have made it totally real.
I discovered a long time ago if I was speaking to either a nurse or a doctor and I said I had Fibro, there was a polite nod of their head. If I said I had PRMS, there was a sudden and clear expression of concern and some would even express their commiserations. It was the same when it came to me giving them a list of all the things I had been diagnosed with, nearly all got that nod, but my PRMS got their attention. I thought at first that that was because I had a rare condition, something they would get few opertunities to see and treat. Some, I am sure that was just it, but I also discovered that it changed my actual speed and type of treatments as well. I have come across many people with Fibro now who clearly suffer truly high levels of pain, but when I talk to most in this country, their treatment for this pain appears nothing but pitiful. I have never been, nor have I ever heard of anyone who has a dedicated Fibro nurse to turn to for help. I have two dedicated MS nurses. One who visits me at home once a year from the GP service in Glasgow and another who is fixed at the hospital. I also have direct contact into the community nursing service, something none of the Fibro patients I have spoken to have even heard of. The two conditions share a huge number of symptoms, they are both debilitating and painful conditions, which can at their worst leave you housebound or even bed bound. On the medical hierarchy, MS is clearly miles above Fibro.
I also came across it last month with the receptionist at my GP Practise. I called and asked to speak to the doctor because I was having problems breathing. The receptionist didn’t seem very interested and it was her that asked in her disinterested tone “Is it Asthma?”. I actually do have Asthma, and I have a sister and two nieces who in their homes have oxygen because their Asthma is counted as deadly. I answered the receptionist by correcting her and say it was my COPD. Suddenly she was interested, she even spoke faster and reassured me she would get the doctor to call me straight away. Another clear hierarchy, but with two conditions that are equally possible to be killed by in minutes. One of the blogs that I read yesterday also had a clear hierarchy created by the author, so no, I’m not going to link to it or even name the conditions, but it was that that made me think. There must be millions of people out there suffering daily with conditions that are totally life changing or even threatening but because they aren’t high on their own doctors, or the NHS hierarchy aren’t receiving the level of care that they should be. I also doubt it is restricted to the NHS either.
To me, it doesn’t matter which of my conditions it is that is causing me pain, or whether it is my Asthma or my COPD that is stopping me from breathing, it deserves the same speed and care of treatment. As odd as it might sound, I have been lucky to be diagnosed with two serious life threating conditions. Come what may, I am always treated with speed and care. I don’t think even the doctors can tell all of the time from which condition my problem stems from, but to cover their backs they treat me as though it belongs to the worse possible choice. I said I was lucky because clearly there are people out there who don’t get that care. Who aren’t on the strong painkillers they might need because their condition isn’t high enough up the list. In an odd way, I actually think that the old complaint of being seen as a condition and not a person needs to be changed. I think there is a case to be put forward, that maybe we need to be treated for our symptoms, not our conditions. Personally if I am in severe pain, I want that pain treated immediately. It doesn’t matter to me if that pain is coming from my Fibro, my PRMS or a broken leg, treat the pain, then look to the cause. I fear that there are people everywhere right now in pain that could be treated. In fact, I know there are.
The system in Glasgow is that once you have your diagnosis of MS, you only see the consultant once a year. Every time I went to the consultant, he changed my meds to help with the pain. It didn’t always help, if it did it didn’t last and I had a year of pain before seeing the person who could change it again. It was only 8 years ago that they eventually put me onto Morphine and asked my GP to work with me to find the right level. I had had years of increasing pain that went almost untreated. If it happened to me, I know it is happening right now to others. Illness is personal, it doesn’t matter what the condition is, what matters is how the person who has it, is actually coping with and reacting to it. I’m not just talking about pain either. I understand pain too well, so it is often the thing I focus on. I have developed the attitude that if it doesn’t hurt, I can deal with anything. Right or wrong, that is how I handle my health, but not everyone will. Others will find different symptoms as the ones that distress them the most and what that symptom is, doesn’t matter. If someone is living with anything that distresses them, it is a threat to their mental health. I am not suggesting that a splinter should be treated like a heart attack, but all chronic conditions should at least be given the respect required to make life better, not worse.
Please read my blog from 2 years ago – 07/08/2013 – Time to rest and revive
Yesterday the paper work from the company who asked me to make a video with them as part of the new site for people with COPD, I had already received them on PDF, I don’t know why, but I really hate PDF, it’s just one of those stupid things, I took a dislike to it when it was still in development and ……. https://livinginalimitedworld.com/2014/08/07/time-to-rest-revive-19070526/
I have been reading your blog for quite some time and am unhappy that the medical system in the U.S. Is starting to resemble the NHS. We used to be able to see a doctor with a simple phone call. Now it feels like we are being rationed. Once a year? That’s outrageous for someone who has your illnesses.
Just in case I didn’t make it clear, that is the consultant Neurologist. I can talk to my GP as often as I need to, but he is limited by what he can do. He has to follow what the consultants have said to them and of course he doesn’t have the specialist knowledge often required. I have found myself having to teach him about some things. I think all medical systems are stretched these days. Cost appears to drive everything, even our health.
AMEN !!! I WISH YOU RAN THE NHS OR OHIP(CANADA).WHEN I WAS A YOUNG GIRL,MY FAMILY GP, GAVE ME SOME TYLENOL FOR CRAMPS .2 WEEKS LATER, I FOUND A GP IN THE MEDICAL CENTRE AND SAID MY KIDNEY HURT. I WAS ON ANTIBIOTICS AND ADULT PAINKILLERS WITHIN A FEW HOURS. I ALMOST LOST MY KIDNEY.DOCTORS/NURSES ASSUME, WITHOUT FACTS.GIVE THEM A SCARY WORD AND THEY REACT.SO UNFAIR, YET SO TRUE.PAMELA, YOU JUST SUMMED UP, WHAT IS WRONG WITH THE WHOLE MEDICAL SYSTEM; NO MATTER, THE COUNTRY. WE, THE MOST SICK; ARE THE VICTIMS. AS ALWAYS,PAMELA YOU HAVE MADE ME FEEL, JUST A LITTLE BIT BETTER……….NEVI