This week has been one of the worst, no the worst week since all this ME madness started. Let me just clarify, when I say worst I mean as in for symptoms, no other dramas. Well maybe some drama, ahem. I have been bed bound from Saturday until Friday and when I say bed bound I mean can't even stand up bed bound. This of course meant that I couldn't even stand up to get on the commode so I have been sliding, scooching and launching myself (ye, that last one wasn't too good) on and off it. Needing help but then screaming at my Mum everytime she touched me as it hurt too much. I'm glad she understood that all my 'French' was not aimed at her. At one time I had to kind of reverse onto the commode that had been pushed right up against my bed and sat on it with my legs out on the bed. That wasn't good! I thought I would pass out and actually it's really difficult to wee like that (sorry about that.) I have also found that one of the worst things is when I am sitting on the edge of the bed to try and bring my legs back up onto the bed. I have had this problem for a while now, as I generally need to sit anywhere with my legs out. Anyway in desperation the other (this word is really bothering my battered brain I keep wanting to put over or offer, naughty English language) night I literally just let myself 'drop' onto my side. Problem solved. Thank goodness for being top heavy haha.
The amount of pain that I have been in (and am in) has been actually quite terrifying. I really did not know what to do. If I moved my toes pain shot through my body. Because of the warm weather I have been sleeping with just a sheet and then a fleece blanket on top if needed. I can't do the whole sleeping without some kind of cover for some reason. Maybe it's a comfort thing? But just the tiny tiny extra weight of the fleece blanket felt like an elephant was sat on me. However in taking the blanket or the sheet off that too made me howl (hmm maybe I am a werewolf too Irene.) How can these very tiny simple movements cause so much pain? On top of the constant ache that you already have. It's insane, maddening, literally madenning.
As I mentioned in another post, on Saturday night I rang the out of hours doctors service because I was not coping and was at my whits end. But all the 'nurse' said was that there was not much that they could do because they did not have much stock. This out of hours service is run out of a hospital! She just said to take some ibruprofen as well, which I really am not supposed to take, infact a big red banner comes up on my notes to tell them that I cannot take it. But this was all she could say. To say that I was angry and upset is an understatement. I just wanted help. I was reluctant to ring for an ambulance (there is no way that I could have got to the nearest A&E without help) although I was thinking that maybe I would need to. I really did not want to go to hospital though and go through the stress of trying to get an ambulance on a Saturday night (that's if they deemed that I needed to go in to hospital.) Then there would be the crazy, over stimulating environment of A&E where we would probably have to wait sometime to see a doctor and then if I did get admitted I dreaded yet more calamity and the lack of privacy and peace afforded by those dreaded curtains. Seriously once you've heard an old lady shouting I'm doing a poo, you are scarred for life. What's more I would not even be able to help myself to get a drink, even if they put that tray on wheels right by my bed. I had that problem when I was sent in when the ME finally hit me. And of course they are forever moving that tray away. I would be constantly on the buzzer, because I could do very little for myself and that would just annoy everyone. You know yourself that you curse the person who's buzzer goes off when you are just drifting off to sleep or the annoying alarms on drip machines. No hospitals are certainly not the most relaxing of places, especially when you're ill, as silly as that sounds but they don't afford you the rest that you need. I have had many a doctor say this to me even. Anyway I am not hospital bashing, for where would we be without them just pointing out some of my annoyances from far too many stays. I look forward to when there are more single rooms, not that I particularly want to go into hospital but it will certainly solve a lot of issues such as privacy and infection control. But enough digressing. I feared that even if I did go to hospital that they too would say that it was 'just' the ME and that there wasn't very much that they could do either. So I decided to just take the ibruprofen for the time being and see how I got on, or just try and put up with it.
Somehow I got through the weekend and first thing on Monday morning my Mum (bless her heart) was straight on the phone to my doctors to ask whether they could give me a prescription or a phone consultation. The receptionist said that she would put me down for a phone consultation with my regular GP but what happened later was a miracle, well a little one my GP actually came to the house! It was like seeing a mirage when you've been walking for days in the desert, not that I have ever done that, apart from that time me and my sister got lost in Cyprus trying to find this aquarium. Somehow I managed to tell him what was going on and he was very good as to not torture me by doing the whole "does it hurt here? How about here?" thing. He could tell from me having moved my toes and moving the blanket that I was in pure agony and panting like a woman in the last stages of labour. As I have an appointment with the rheumatologist on Wednesday ( that's tomorrow, hooray!) he said that his main concern was to get the pain under control (Halleujia!) and to stop those ruddy ibruprofen before I have anymore problems. So he prescribed me some oramorph and said that he would phone on Wednesday to see how I was getting on. I could go into a big diatribe about the usage of oramorph here but I'll save you all. Let's just say that I was quite shocked that he precribed it for home use (not questionning his ethics at all) but I was glad he did, I sure needed it.
However the oramorph seems seems to be having some effect. By the Wednesday I could tell my GP that I had managed to get some much needed sleep and that I had actually managed to stand up to get on the commode. However I wouldn't be able to make my appointment with him at the surgery the following day and again he said that he would come out to me again. Where I was able to tell him that I had managed to walk to the bathroom and back but that I was still needing to take the oramorph and paracetemol regularly. He was happy with the progress and was hopeful that I'd be able to get to the hospital without too much distress on Wednesday, luckily it's fairly local. Well more local than the main hospital.
He touched a few 'trigger points' ( I will explain more about that soon) on my legs and the radiation of the pain was horrid. However he explained that due to this he was fairly certain that I also have Fibromyalgia (will explain that one soon too) but he'd see what the rheumatologist had to say. He explained to me that what seems to be happening is a problem with my nervous system and pain signals that have gone haywire. In a way that something that shouldn't hurt like a simple tap, wiggling my toes and the weight of the blanket is actually causing me an insane amount of pain. Where of course they shouldn't hurt that much, well actually not at all. A blanket is for comfort after all. Since he explained this though it certainly has helped me understand what is going on and how I can be a bit more careful. This is what the neurontin tablets have been trying to combat but they don't seem to be having much of an affect on me. Oh why am I so awkward? So he has advised me to start cutting down on them. It's important to come off these gradually because otherwise it could be nasty.
The doctor also said that if I am diagnosed with fibromyalgia as well then he has "ways and means" as said in a German accent, he's a funny guy, to hopefully get it under control. So I feel pretty reassured. I am certainly grateful to have a GP that is being proactive with my care and actually researches different treatment options. Maybe he likes a challenge! But having a good GP is paramount. They are your first point of call and have access to the bigger picture in terms of your medical history. Threfore it's important that you have a good rapport with your GP. That you feel you can talk to them. For that is the only way that you can get the best care for you. Of course they have a duty of care but if you can't talk to them openly and honestly then some issues don't get addressed.
When you have a chronic illness admitedly getting to the doctors can be quite a trek. You have to be somewhere near your best to be able to get there and yes I know that again that sounds crazy. So in a way your GP may not get a true sense of what you are experiencing. I will admit that I will generally talk more about my pain and fatigue levels and sometimes forget to focus on the lifestyle aspect, such as how much activity you are able to do. Not on purpose of course but sometimes you forget the necessity of mentioning these things or you somehow assume that they know. Well they're not mind readers. I think that with having the home visits last week my doctor was able to see exactly as I was living. Like I'm sure I never told him about using a commode (sorry I keep going on about that, don't I?).
A good doctor though can really make a big difference and I am really grateful to mine at the moment. He is going the extra mile. I will admit that sometimes I will see other doctors within the medical practise but that's because in my many visits I've learnt who is best for what. Okay, admitedly it's all ME related at the moment but if I were to have more depression issues I have another preferred GP for that, who's a bit more of a listener. The day I go in there with something normal is always a shock. I have to say "can I stop you there I'm actually here as I have a sore throat."
But the lesson is that you need a good allae in your doctor. One that will listen and try everything to help. One that isn't afraid to research and learn new things but also to ask for help. Such as hospital referrals to get you the best possible outcome. With a chronic condition it really is crucial because you will see them more times than you see some members of your family. So if you don't have a GP or doctor that you can gel with don't be afraid to find one that will. Yes it can be a hassle but they might even be in the same surgury. But you owe it to yourself and it's nothing short of what you need and deserve.
So I will keep you posted about how my apppointment goes. I hope she has lots of time as I have been trying to keep a list with everything on there and lots of lots of questions.