Still worth it

I really have turned into a delicate flower, right now I am sat here still aware of something that woke me at 6am, a pain on the point on my nose where it changes from bone to cartilage. I had woken the night before for no reason I could find and as I lay there awake the only thing I noticed was the light in the hall, it was the early hour, yet there it was light bouncing of the celling. I decided that it was probably the TV or Adam playing with his phone, clearly if I had worn my sleep mask neither would have woken me. So last night I went to sleep with my mask on, I have been wearing it during my daytime naps, but apart from my first night test run, I hadn’t bothered during the night, clearly that was a mistake, so on it went again. I woke this morning with intense pain on my nose, it was exactly where the mask outer seam was touching my nose and I do mean touching, not digging into or even tight on, just lying there it was causing me pain. I pulled it down a little lower and headed back to sleep, yet here I am 4 hours later and I can still feel it without even touching it, touch it and it’s painful.

I have spent the last 4 years with no change in what I wear, everything is loose and soft, but I had totally forgotten why I made the change. Most of my life I have worn really tight clothing, I preferred to know without the slightest doubt where my clothes were, I normally even wore what most would call corsetry, but without the lacing, just best and most ridged modern version I could buy, not only were they comfortable, they actually really do make all cloths look better. To me the fact they were comfortable was the most important factor, but when the outfit didn’t allow, well I added tight elasticated belts and so on over my clothing. There was something comforting about being constricted like that and I was not just physically comfortable, but mentally to as I knew I looked good and that gives you confidence. I always changed me clothes when I came home and would wear an old fashioned long nightdress and velvet dressing gown, still mainly tightly fitted but softer. When I became housebound, I stopped getting dressed and just lived in my nightdresses, slowly I started finding the their tightness and their straps were cutting and causing constant pain, not just because I was gaining weight due to my immobility, as I had already bought larger sizes, but anything that was tight was causing me extreme pain, where ever it touched me. Reluctantly I changed and started wearing looser and looser nightwear, until now when what I wear isn’t just loose it is two sizes bigger than I need, just to be sure nothing can ever cut into me, regardless how I sit or lie. The material they are made of isn’t just soft, but has a large amount of stretch to it, so that even it getting caught under me can’t truly pull it tight. It isn’t just my clothing that caused me problems, even the duvet can cause pain in my feet as does the softest footwear I can find other than just socks. When your nerves are damaged, they miss read things, things that shouldn’t be a problem become huge issues and it appeared that nearly all my skin surfaces had become confused. The problem wasn’t on the inside of my body, well not to any depth, it feels as though just the surface centimetre or so causes all the trouble, anything pressing, even lightly can turn into pain, I know I have said in the past that I can’t even take my hands lying on me, or even touching my sides as I go to sleep, I have to ensure they are far enough away from me that they can’t just slip across the bed and touch me, as the pain just builds and increases stopping me from sleeping. It isn’t just my nose that is in pain, but also my right eye lid is causing me much bigger problems than my nose, as it is really reading things wrongly and keeps streaming with tears as though it is trying to rid itself of something that shouldn’t be there. There isn’t anything there and in fact it doesn’t even feel as though there is, it is only my eyelid that feel a little irritated, so when I go for my nap, well the mask will be loosened until I find a position and lightness of touch that my entire head will consent to.

It is so easy to throw your routine into a massed muddle even when you believe you are holding closely to all of it, but I did say believe. I don’t actually think I have managed to be in total routine since a last Saturday, all thanks to my determination to stay up and see the final of “Strictly Come Dancing”, it was such a basic mistake, one that I should have known no good would come out of, but I did it and from then on, things have been floating apart like snowflakes. Every day without really noticing it, I have let things slip, or had a longer sleep or a shorter one, consistently every day I have done something I shouldn’t, Christmas day being the worst, wrong food, wrong nap length and another late night. So having stood in the right spot and asked the mule to kick, why is it I am still surprised at just how rotten I feel today? I sealed my own fate yesterday by still eating the wrong things at the wrong time, then sitting here at my PC until 8pm playing a game, simply because there wasn’t anything on TV I wanted to watch and Adam was in the kitchen doing dishes, so I sat here playing a game unaware of the minutes ticking by, suddenly it was tablet time and I was still sat here, not relaxed or resting in anyway. I am really paying the price today for my entire week of miss behaviour, it does often feel that way, as though my PRMS is some kind of strict head teacher and right now I am in detention, as I dared to do what I wanted and I broke the rules. I knew there was going to be a price to pay but I didn’t expect to feel as terrible as I did yesterday or today, at least so far the vertigo has settled a little further, but the total fatigue, nausea and general feeling as though I should be in bed dying, just isn’t lifting. When I feel like this it is hard to eat the right things or at the right time, I have already turned my nose up a breakfast again, so just a few hours into my day and I am already breaking the rules, but I have little choice.

PRMS isn’t fun and it doesn’t like me having fun either, but at least I can still laugh at myself and smile at memories as I write, I know that sounds a little silly, but smiling when there is nothing to really smile about, does actually slowly make you feel that bit better.


Please read my blog from 2 years ago today – 28/12/12 – Sifting the smile inside

Last night I was so tired that I felt chilled to my core, not the kind of cold that comes from outside but from within. I put my electric blanket on as I got into bed in a vain hope, that the cold would lift, I don’t……

The price is never right

All to often it takes something major to happen for us to realise it has been building up for a long time, yesterdays vertigo was one of those moments. It wasn’t until I was sitting quietly half watching some stupid comedy program, that I started to put things together and to make a little more sense out of had happened that morning. As I said yesterday I knew before I ate all I did on Christmas day just how yesterday was going to go, if only my taste buds had been having one of there lets kill the flavour days, it wouldn’t have happened at all, but they didn’t and I did. Eating to much always brings on and intense feeling of nausea and dizziness, but yesterdays when it hit me with it’s full force, it wasn’t totally on track, it wasn’t an attack of just dizziness, but vertigo. There is a distinct difference, dizziness is an internal feeling, like you are the spinning object, vertigo is when you are stationary and the world is spinning, both make you feel sick and both make you feel unsteady on your feet, for me though it is vertigo that holds the greatest danger of falling. I have never worked out how it is you can sit for ages feeling terrible, but then in a split second, staying where you are is impossible and bed is the only option, what changes I haven’t the slightest clue, I just know that that is what happens.

I had noticed that in the last few week or so, I had been having mild spells of vertigo, enough to make me take sudden sideways or backwards steps when either walking or just standing. Like all symptoms that belong to all versions of MS, vertigo comes and goes, you can go months with a symptom not being there or appearing for a day then vanishing again, so it turning up wasn’t really a surprise. I can’t remember the exact day I noticed it but I do remember that I have had mild bouts or just over a week, when you are used to walking in reasonably straight lines, to suddenly finding yourself swaying off to one side to stop yourself falling, you notice. Oddly I often loose my balance before I am truly aware of the feeling that caused it, I can only guess that they happen instantaneously. It is like being hit with a hammer of motion sickness just because you are walking and worse still, sitting in a motionless room that suddenly starts to swim, when you have poor eyesight it is also very easy to blame your eyes. Like yesterday it can become so intense that you are left feeling that death at that second would be preferable, anything other than that intense nausea and inability to make the world stay still. The more intense it gets, the more you feel like your brain is going to explode and you simply can’t bare to keep your eyes open, closing them doesn’t stop it all, but at least you start to feel as though you are a little more in control, you need as many signals as possible that you are in fact motionless. Sitting is good as you can feel the chair under you and of course the back to some extent, but to really make the world stand still you need to feel as much contact as possible with something that can’t move, hence the desperate need to lie down, you need that contact from head to toe.

Vertigo is very much part of MS, but for me I know that I have a double issues with food playing it’s role, I also know that regardless of what ever it was that kicked it into action, it will be with me for a while. The next few weeks will see me being even closer to walls and walking with even more care, which now that I know I have to do it, isn’t an issue. I guess I will just have to go back to being careful with what I eat, last night I did have an extra meal, but I didn’t have breakfast or loads of Orange juice, not a normal days food, but that bit closer and today, I’m not wonderful, but I’m OK to get on with normal life. It really stinks not being able to push the boat out as far as others do at this time of year, as to me food and Christmas go together, a link made in childhood and one I find impossible to break. It is the one time of year when you buy and enjoy the best of everything there is and to me that means not just flavours I may only ever afford once a year. I even remember the year that it happened as even as a child I avoided sugary foods, the type that uncles and aunties thrust at children expecting total glee, received a somewhat glum face from me. by the time I was 7 my total hatred of ice cream was well known, but still the chocolates were bought and half heartedly said thank your for. It was that years Christmas day that my mother found me happily eating an olive, one she had bought to put out for visitors and like most parents never thought her children would actually eat. When I asked for an anchovy, she told me I wouldn’t like it, but she was so wrong, it was delicious and I ate it with relish and had to be stopped from eating any more, but it also turned into a game, of what will Pam eat if we give it to her. The answer was almost anything that children are supposed to not like. It was the day that I also discovered soused herring, caviare, blue cheese and even malt whisky, mind you that was a mere sip, the only flavour I didn’t like was my Great uncles cigar, which caused huge laughter as I choked and spluttered on a lungs full of smoke. I never looked back from that day and I have spent my entire life discovering and enjoying almost every savoury food I have come across, the foods that many won’t eat and even more, including myself, can’t really afford outside of special occasions.

I am a huge believer in listening to our bodies, they normally know what we need and what we don’t, but I am also a great believer that life has to have those time when pleasures, good for us or not, just have to be enjoyed. One more Christmas is behind me, one more day out of how many where my life has had restrictions pushed upon it and one more were I said to hell with it, I’m a long time dead, the Christmas season is all about living in the excess of enjoyment, whether there is a price to pay or not.


Please read my blog from 2 years ago today – 27/12/12 – Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd……

Christmas Recovery

Yesterday went well, well at least when I finally woke up properly not long after our late breakfast. I have realised there is a pattern forming when it comes to Christmas, I head into it with every good intention of sticking to what I know is safe, but when the day arrives, I fling that idea, baby, bath and water out of the window. Actually, for a change this year I got right through the entire day not feeling too bad and apart from not working out the time and what still had to be done, I headed to bed for an hour and a half nap, I wanted to be up until 10 so that I could see Eastenders and I made it. My nap found me waking up with my ears blocked and face mask on, but with the benefit of a good sleep and a plan to get me through the rest of the day, well what I thought was a plan. Plans only work if you have allowed for everything that might and might not happen, I hadn’t allowed for anything other than getting up and sorting our the past 12 hours of Twitter, I hadn’t allowed for talking to Teressa, or cooking and eating dinner, these were clearly things that were going to somehow happen without taking even a second of the time I had left.

I woke feeling really good considering I had already drunk half a bottle of Cava in the shape of Buck-fizz, I poured another and sat fiddling on the PC as I slowly started to come to life, then picked up the phone to return Teressa’s call which I had missed as I was asleep. She had the idea that it would be nice to have a call on Skype, but when I had to have the hard drive changed a while back, I hadn’t reinstalled it, with Teressa now in the UK and our conversations happening more and more on the phone, I simply hadn’t bothered to reinstall it. We spoke for about 20 minutes about nothing of any real importance, just chatter, but it was really good to speak to her, I brought the call to an end simply because it was getting late and I didn’t actually want to be eating dinner too late. Cooking was a conjoined effort, I knew if I hadn’t been in the kitchen it would have taken much much longer and the trout which we were having for our main course would have been some what dry, it only takes a couple of minutes to ruin a piece of fish. Adam was doing the work and I was simply giving instructions, one of which was to set an alarm to ensure the potatoes and veg went on at the right point. It was totally my fault that the white sauce I had planned for the veg didn’t actually happen, I had forgotten to buy milk, we always have a few cartons of long life stuff, I just didn’t realise I had been using them in the wrong order, Apr 2013 didn’t seem like a safe date to use. To be honest I didn’t miss it at all and despite pushing myself, I didn’t manage to finish the main, but I did the dessert. Despite the so far disappointing Christmas TV, what they showed in the evening meant I totally enjoyed the evening on BBC1, good food, good entertainment and good alcohol, meant a perfect evening, even though I was really tired.

So far so good, but this is where it all went wrong, I was exhausted thanks to the last few days and it has caught up with me big style……………

……and I just proved the point that I had been about to write when I suddenly couldn’t stand another second and I went to my bed. I had set the alarm for 2 hours, believing that I wouldn’t sleep any more than maybe an hour. It sounded about 5 minutes ago, I had woken just seconds before and I was almost dressed when it sounded, whilst actually in my hand. If I am totally honest I don’t feel a huge amount better than I did when I went through there, I also recognise it as being what happens when I eat too much. I did have a lot to drink yesterday, but nothing like enough to make me feel this way, a bottle of wine spread over 10 hours doesn’t do this, plus the one thing it doesn’t feel like is a hangover and it does feel totally like something I normally avoid, over eating. I may feel terrible but in all honesty, what ever was the cause, I don’t care, I throw the dice in the air yesterday and today they have landed, so I am happy to accept their result, it was worth it as it was Christmas.

I know without a doubt there are people who don’t have PRMS or anything like it, who simply don’t get how just having a little fun can result in someone being smashed into pieces. This is the life we live, there are no days off, no nice tidy package with the instructions for every day, what we do daily is guess work and what we pay for the guess work, depends on how well we learn to guess. I might not feel like this if I hadn’t insisted in eating 4 Florentine,s, or possible only had half the slice of gateau, who knows, I don’t. Today is a day of paying the price and after my sleep, well I feel that bit better, but I doubt very strongly that I will stop aching, or cease feeling as though every limb is made of lead. I do hope that at some point my balance returns and the room will stand still, the really big issue that pushed me to bed, as vertigo as it is no fun at all.

I hope tomorrow to be back on track and able to also be back in routine, as the whole world is wrong for me right now, something on it’s own can really throw me into being ill. I’ll tell you tomorrow if I still feel that it was all worth while.


Please read my blog from 2 years ago today – 26/12/12 – Switching off painĀ 

Last night I went to bed with what felt like several spears stuck in my left side and feeling so sick I thought I would be out of bed any minute, yes I went for the I’m going to enjoy today and stuff how it makes me feel. There is as I said always a……..