Don’t get ill

I have for the first time ever asked Adam to not go to work. I have never felt that need before to not let him leave my side, although he has often enough offered. On Sunday morning, I woke with the worst headache I ever remember having, well last night I topped that one. It was just after 11 p.m. when I woke to go to the loo, a problem there is no simple solution for when all I seem to be doing is drinking cold liquids. In itself there is a clue, cold liquids, Adam has no doubts left that I keep throwing temperature spikes. Anyway, when I woke I felt as though someone had been dancing on my brain in stiletto heels and one was still stuck through my right eyeball. I couldn’t get off the edge of the bed, just sitting there knowing I needed the loo, but with no way of getting there as that meant standing up. I don’t know how long it really took me to get there and when I did and sat down, I didn’t want to move again. My body wasn’t so much mine, as some horrid vessel that I was trapped inside. I kept trying and trying over again and again to cough as my lungs felt as though they were underwater and every breath in or out was travelling through that water in bubbles. I felt sick, distant and so far from myself that I was actually scared of heading back into the bedroom. Adam was in the kitchen so I lite a cig in the living room and sat there in the dark, wondering why I had lite it at all, it was the last thing I wanted, not something I ever say. I let it burn for a few seconds then put it out and headed back to the bedroom, I wanted to be without my dressing gown as I was starting to drip sweat, once again without being warm. Waking up at 5 a.m. to find a that a pneumatic drill had moved in on the party and I quite honestly didn’t know what to do with myself.

If I had been able to think clearly at that point I would have spoken to Adam there and then, there was something really wrong and clearly growing, but all my brain was saying was sleep. Right now I am waiting for my doctor to phone back, When I called I knew he wasn’t going to be there, but I was hoping that if I were at the top of his call back list that he might call before surgery rather than after. As luck would have it I found myself talking to the snooty receptionist. Everything about this woman is annoying but her patronising tone is her worst attribute but on I actually removed at the end of the call. I told her that I am having problems breathing, her one-word answer was “Asthma” not even as a question, it was a statement. I clearly didn’t answer quickly enough for her liking as she then said “Do you have Asthma?” I answered “No, I have COPD” and she changed instantly. I don’t know what her problem is but when she seems to think that you have something standard or minor, she’s rude. Mention my MS or my COPD and she’s really nice, but it shouldn’t be like that. She went from snooty to almost apologetic that the doctor wasn’t in until 9:30.

I honestly can’t believe how bad my head was overnight. I like everyone has had headaches, but without any exaggeration this is the worst I have ever known. Until I am told otherwise, between the pain and the way that I wasn’t really making sense of things either last night or on Saturday night, I am guessing that I was short of oxygen. Thanks to the fact that in the UK we don’t have a 24/7 medical service all I could do was wait for this morning. Our doctor surgeries and the hospital services are virtually none existent at weekends and are working on a shoestring. Part of me was screaming that I did need help and I needed it there and then, part of me was screaming I’m not going to the hospital. If I had gone to hospital as I have done in the past for bronchitis, I know they just give me a steam inhaler and then sent me home. How many hours that would have taken as I can’t just go there and come home, I would guess I would have been stuck there until today when they could eventually arrange a stairclimber crew to take me home again. Going to the hospital at the weekend isn’t something I even want to try. It seems to be one of those oddities of life, that it is your health that has made you housebound, yet the most dangerous aspect is when you need medical assistance, finding it is almost impossible. A healthy person is only as far from their nearest hospital and to medical care. For anything from assistance for anything from a sprinter to a broken limb, or heart surgeon who can say their life. I, on the other hand, can’t really say that, the hospital is no further away from me, but it might as well be on the moon when you can’t get there or home again. I didn’t need or want to call 999, you only dial that number when you are in danger of imminent death I wasn’t, but I would then have been stuck, at their mercy.

I needed help, what most these days would be called walk-in help, as clearly I am still alive and I wasn’t dying. In fact, if I were to go back in time to my twenties, I would have just phoned my GP’s number and I would have been put through to a duty doctor, who would have come to me. That was standard NHS treatment, not just for the elderly or terminal ill, if your baby had a temperature the time of day didn’t matter, you called. If I had called last night I would have been put through to NHS 24, a switchboard of people with scripts to read. Yes, I have done it in the past, they normally ask if you can get to the hospital and that’s where you go. The passenger transport ambulances don run at night, but only as single crew member, which means no stairclimbers, a 999 ambulances would have to have been pulled to collect me and take me to what they call minors, where there is a duty doctor. I have to admit to having been just living on a wing and prayer, that this wouldn’t happen, that I wouldn’t need medical assistance outside of weekdays and daytime. My GP is great in one respect, he is happy to listen to me and to prescribe without seeing me, doctors who don’t know you, won’t do that.

Just like at this time yesterday, if I keep my body as upright as I can, I seem to breath without too many problems. I just sat on the settee for ten minutes, leaning forward as I was searching for something on the TV, by the time I stood up, all I could hear once more were bubbles. Cough, and I rearrange them, I still can’t cough it up which is probably why I couldn’t breathe last night. I had pools of phlegm that just bubbled as I breathed, blocking the oxygen from filling my lungs. When Adam ask if I wanted him to stay at home, I for the first time ever said yes. My thinking was that with luck my Dr would call back sharply and Adam could then jump in a taxi to collect it. I am sure that an antibiotic and a nebulizer will sort this out quickly, but only if I get them quickly. Now I find myself sitting here both feeling really crap and guilty that I hadn’t told him to go to work.

Read my blog from 2 years ago today – 14/06/13 – Secondary pain

They call it sods law, I call it B* annoying. For two nights I have climbed, no sorry fallen, climbing indicates real control, going to bed is more a case of my setting up the motion and instinct taking over. But yes it has been two night ………..

One steps forward, two steps backwards

I hoped as I wrote yesterday that the previous night had been a one-off, something that could but wouldn’t happen again, well at least not anytime soon. I didn’t have the same things last night, but it was a night of broken sleep, simply because once again I was feeling sick. Last night is the only night without large quantities of alcohol, it didn’t matter if it were at 8pm when I took my meds or at 4 am when I last woke, I was at that point where I was almost sure that any second it was actually going to happen. It isn’t that severe at the moment, but I am still feeling sick and I have honestly had enough of it. Last night I was blaming it on a mad idea that I had to try taking another of those peppermint oil capsules at around 2:30 that afternoon. By 7pm, I was sat on the settee with heartburn and yes the taste of peppermint overpowering everything. As the evening progressed I started to feel sicker and sicker when I took my meds I also took an anti sickness pill which totally failed to work at all. Come bedtime, I was even unsure how I was going to make it across the flat to the bathroom and then to bed. It was while I was lying in bed for the first spell of fingers crossed horizontal prayers that one of my theories appeared and it is a valid one. I am wondering if I am actually allergic to peppermint.

All my life, mint has been a flavour I have done my best to avoid, not an easy thing to do if you think about it. I don’t remember having any bad reaction to it in the past, just a really strong dislike of all things minty. I even hate it in toothpaste, but it’s in the majority of all reasonably priced ones, so I put up with it, after all it’s not a huge amount. It has been one of those things that has annoyed me all my life, that daily I have to put mint in my mouth and the world offered few other options. Clearly I have no choice, but it even goes as far as the fact I have never been able to stand kissing anyone who has just cleaned their teeth. Anyway, my theory is quite simple, is my strong dislike, actually my body telling me to stay away from it because I am allergic to it? Even this morning I woke with a headache and feeling sick, milder than yesterday, but it’s still there. The only other time in my life that I have taken peppermint oil it wasn’t as concentrated as these capsules and I only took it at night when pregnant to help with indigestion. I don’t remember taking it for long, but it is so long ago now that I would be surprised if I could remember anything else. Last night when I told Adam that the peppermint was causing heartburn, he suggested that I took it before eating rather than after, but after how it made me feel later, I’m thinking more along the line of not taking it at all.

Just a few years ago if you said to someone that you were listening to your body and doing what it told you, most people would have burst out laughing at you and put you on to their list of nutters they have met. These days, it seems to be the first thing that people tell you to do once you are ill. I have lost count how many people have actually told me to listen to my body as it knows best, even people in the medical profession. What I never thought would happen, is that sometimes your body is screaming so many things at the same time, that you still don’t know what to do for the best. It is over a week now since I last got through a full day without feeling sick, from mild to yes actually throwing up. I am now at a loss again as to what is causing what and what I should do about it. It is tempting to put it all down to the Psyllium and peppermint oil, but something is stopping me from doing so. What’s stopping me is simple, how I feel just now, could equally just be and acceleration of how I was feeling before I started on them. I have no doubt about the peppermint causing the heartburn, but the nausea and the desire to just go to bed, are all too familiar. Throw in the pain and fatigue, and I am in rather a sorry state if I am being honest and I don’t have the slightest idea what to do about it.

Technically, I have been ill for 33 years, but not one of those years do I see as being ill. They were my normality, they were just the way things were and I lived through them. So to say now that I am ill, to most would sound really wrong, of course, I am ill, I’m always ill. Today I can draw a clear line and say without a doubt that for the past week, I have been what I would call ill. That is a picture I am sure many will relate with, illness has a huge range, a range that runs from acute to chronic and because you are one or the other, doesn’t mean you can’t have both. I know I am both, but I’m not sure if the chronic is behind the acute, or it’s totally separate. You can’t strip one away from the other, our bodies don’t work that way, we are whole creatures and we feel everything as a whole and that is where the problems begin. My pain levels are raised today, everything is raised today, normally I can pinpoint the catalyst, normally I can be sure of what I am saying and writing about my health as I don’t ever feel there are grey areas. I long ago gave up trying to say this belongs to my PRMS or this to my Fibro and that to my COPD and so on, it doesn’t matter which is behind it in normal everyday life, as I just get on with it. But today it does matter, can I cure this, do I need assistance, is it something serious, I don’t have the slightest idea.

I am so used to dealing with everything my body throws at me, in just getting on and living my life, that finding myself feeling as though I want someone else to make me better, is an alien concept. That is how I feel today, that I need someone to take care of me, to make me feel better and to take this whole thing away and just let me be my normal in pain and ill me. If I could hide, if I could vanish into sleep and wake feeling better, I would. Last night showed me this isn’t going to work that way. My magical sleep isn’t my wand of life right now, as I woke just as I went to sleep, feeling acutely ill and completely confused by it all.

Read my blog from 2 years ago today – 30/05/13 – Where your partner stands

Today started with an unexpected bonus, Adam had read my blog from yesterday and without saying anything made a rather sleepy and squinted eyed journey across the living room to give me a kiss. He wanted to apologise for the snipping and impatience. I didn’t write it to get such a reaction, I wrote because I wanted to……

It has to be recorded

When I sat down to write yesterday I had the intention of writing a very different post than what eventually appeared. That’s not that unusual for me, my brain just runs off on it’s own plan and I land up where ever it takes me, I didn’t remember until I reached the last paragraph but there was just to much to say to add it in at that point, so I made a few notes for today, otherwise I knew it would get lost again. So today I am starting with something that has been bothering me for a while, I just for some reason hadn’t written about it. To be honest there are often symptoms that appear and I wait to see where they go or if they just simply go before I write about them, everyone ill or not get’s one off occurrence of things that don’t quite make sense or simply never happen again. In some ways I haven’t been able to get out of a habit that appeared before I was diagnosed, being so used to not being believed by anyone, I simply didn’t speak about or go to the doctor, until I was sure it was real or I had had the same thing recurringly over several weeks not just days. I did sort of start this yesterday by talking about the fact that the focus of my PRMS has moved it’s focus and is now attacking my upper body far more than it’s original focus of my legs.

About two months ago I started having more pain in precise areas of my ribcage, at first it was just in my sides curving slightly into my back, especially my left side. In fact it is there just now, which for me was one of the things that I found odd, as the worst of my pain and breathing problems always seem to be at night. Then a pain I have had at night for a while in my left side again, but in my back which I had been putting down to the way I lie in bed, I had been assuming that it was a pressure point more than anything else, but there is no pressure when I am sat up. On there own, well neither are earth shattering or so bad that I would have even considered writing about but they have brought one other thing with them that has to be added here as part of my record of what is happening. It has only happened about a dozen or so times, most when sat right here just doing what I am do daily, so there is nothing that could have triggered it, as there is no stress in daily life. In some ways I would describe it as a massive spasm, as the contracting pressure is very similar, until now the spasms in my intercostal muscles always been in single bands, following the line of one or two gaps between my ribs, so this is new. Yes the first time I did wonder if I was having a heart attack and I did sit here feeling a combination of shock and fear, but there was something stopping me from calling for help. The worst pain was in my sides, not my front or even back, a place where many women feel a heat attacks and there was no pain in either my arm or my jaw or any of the other places it could possibly appear. Some last longer than others, from under a minute up to about 5, then they slowly subside and everything goes back to normal. Relaxing and slow, shallow breathing seems to make a difference, if only to take my mind off some of the pain, as yes it is truly painful and there isn’t anything you can do about sudden pain like that, tablets don’t work fast enough, I doubt anything would.

Each attack has varied not only in length and intensity, but also in their focus, yes the pain goes right around me and it is more often most painful in the left side, but a couple have switched to the right and one it was right in the middle of my chest. A couple have happened when I was in bed actually in the process of falling asleep, put it all together and the picture is clear to me. I believe the pain in my back and left side is my Emphysema as trying to take deeper breaths makes it more painful and it is becoming part of every day life for me now, rather than just now and then. The attacks, well that I believe is my PRMS doing what the doctors warned me of over 18 months ago. It appears that it has had enough of just a couple of intercostal muscles at a time and has decided to go for them on mass, something that to me makes more sense than the singular ones. I have always struggled with the concept of the MS hug, as I would have thought that causing two separate muscles on different sides of your body to go into spasm at the same time, was some what unlikely. When you breath all your intercostal muscles work together doing their part in process, to me it seems more logical that if it was triggering the nerve that makes them work, it would be triggering them on mass. Clearly MS hugs exist, I guess then mine just wants to give me really big hugs and has become fed up with just it’s once playful ones. I was told that the danger from my Emphysema might be lessened if I stopped smoking, but there was nothing that could be done to change what was happening with my mechanics of breathing, which even then was what they thought my main issues where. It seems it has stepping up things when it comes to severity, add in the increased diaphragm spasms and I suppose it was inevitable that this is what would happen.

As I said this so far has only happened about a dozen time, but that is enough to not be able to brush it aside and say it’s not happening. I am still in between having the hugs I am used to but trust me it’s not nice to find yourself stuck in a vice that is crushing the air from you, so far it isn’t bad enough to make breathing impossible and as long as I stay calm and breath slowly until it passes, I’m fine. In some ways it is probably easier for me to deal as it hasn’t appeared out of the blue and I have been dealing with pain for years, I know how to totally relax every muscle I have control over, unfortunately, there is no controlling a spasm, large or small.

Read my blog from 2 years ago today – 12/12/12 – A test for confusion

I seem to be breathing through water today, but the strange thing is that my throat and my lungs don’t hurt at all. I know I have a chest cold that is for sure as I am clearly not well beyond normal, but all the discomfort that normally goes with it just isn’t there, so maybe when doctors say……

999 or not?

I really thought that I had broken through the spell of not being able to eat, I had made it right through the weekend without missing a meal or not finishing it, then yesterday morning I ate barely half and today, I can’t even face making it. The good news though is that it has confirmed just what I thought, it is the spasm in my diaphragm and guts that are stopping me. It wasn’t that I have been spasm free, far from it, they had just reduced in their intensity, which I believe proves my theory that the locking of my diaphragm is restricting firstly if I can eat and secondly putting pressure onto my stomach with the result that I then feel sick. Proving my theory is only the first step, the next is what do I do about it, as clearly I need to eat just like everyone else, plus today and on many other mornings as well, I am feeling sick just from taking my morning meds. The fact that I still have on tablet stuck in my throat just below my voice box and my guts are throwing spasm so bad that my entire body starts shaking and sweat is pouring out of me, isn’t helping much either.

I can’t even sit when they are at their worst like that and I couldn’t type to save my life, so then I have to stand and try and let the fact my body is stretched to deal with what ever is going on inside of me. I wondered through to the bathroom when they were at their worst, why I am not totally sure, as other than the fact they are in my gut, I honestly don’t feel like I am going to go to the loo, well not any time soon. I stood for a few seconds at the sink and was shocked at just how white I had gone, I am normally rather pale, but honestly I was white, all and any colour that was usually there had totally gone, add in the sweat and boy did I look ill. When I start pouring with sweat like that due to spasms the instinct is to start shedding layers of clothing, but the house is actually really cold, so my skin starts burning as it doesn’t want to be uncovered, even if my body is tell me to.

In the past hour this has now happened 4 times and to be honest at one point I was very close to screaming for help, but who and what for? I am an PRMS patient, I get spasm, I get really bad spasms just like I am getting this morning, what could anyone do for me? Nothing! I woke up at 5 am this morning totally drenched in sweat and at the time I could find no reason for it, I had woken suddenly but when this all began this morning I knew instantly what the problem must have been last night, but the spasm must have been a sudden sharp burst, gone when I woke. Which is actually exactly what the first two spasms this morning were like, sudden, sharp and startling. I have only been up for less than three hours and I am already shattered, there is nothing like pain for stealing all your energy and it isn’t being helped by the fact I let myself get so cold, the cold always makes me want to sleep.

I may have been ill for most of my life and now lived with PRMS in full flight for the past 13 years, but I never know what to do when things get like this. It isn’t just that it comes out of the blue, that is one of the things that goes with the turf, but it is the constant clatter of questions in my mind, starting with “You know it will pass, do you really need help?”, then “How long do I let this go on for, before I have to call for help?” They have to be the hardest questions to answer, as no one wants to look like an idiot calling for help for no reason at all, or in today’s case, for one that is nothing more than trapped wind. No one want to look like a complete idiot or waste other peoples time for absolutely nothing. When a spasm is in a major muscle, like my legs or even arms, it is easier to know that there is nothing anyone can do to help, but when it is in my gut like today, or the more common ribs, diaphragm and lungs, the answer is anything but easy. It becomes a new range of questions, starting with “Is this my PRMS or is it something else”, how am I supposed to answer that one, I can’t see inside me, I could quite easily at this second have a compacted intestine that is getting ready to split, I doubt it, but I could. When it’s my chest I have on a couple of occasions terrified for a few minutes that I was having a heart attack and on others that I wasn’t getting enough oxygen. Clearly I am still here and still alive so I would have felt really stupid about calling for assistance on any of those occasions.

Until the spasms started happening in my upper body and intestine, the answers where simple, it might hurt like hell, but no one dies from a spasm in their leg, no matter how bad it is so the only thing that there is left to question is how long do you let it go on for and how much pain you can take. I have never called for assistance for those sort of pains, but I have never had a really painful spasm that has lasted longer than 15 minutes and I think that one ran away on fear as I had the phone in my hand when it suddenly vanished. I have never been given any guidance on any of this, no one gives you guidelines as to what to expect, what is normal and when it is right to scream for help, we are all left in the dark trying to work it out for ourselves and I don’t think that is right. When there is no longer a single area of your body that is unaffected, knowing if it is that or something else, just gets harder and harder and there are no simply ways of working it out. If I had called for help every time the questions started, by now they would be taking my phone away from me, but joking aside, I would have been in and out of hospital a very large number of time. No one lives with pain without questioning over and over, is this right, is this how it should feel, or is this something new and different, nor are we immune to plain and simple fear

There are no easy answers to any of it, I guess it is a case of knowing yourself, your condition and your pain levels, after that, well it’s all guess work and prayers that you make the right decision at the right point in time.

Read my blog from 2 years ago today – 19/11/12 – Looking towards Christmas

I realised over the weekend that Christmas is again crashing towards us are full speed. I used to love Christmas so much as I love all the decorating and giving or presents, everyone always told me I went OTT but I gained huge pleasure in doing so. My home would be decorated beyond most……