I'm a big believer in the fact that things happen for a reason. Even if at the time it's often difficult to see what that reason is. I've lost count of the number of times I've told my friends this when they are having a difficult time, and for the most part it's been true. Better jobs, nicer men, happier lives etc, I've seen my friends go on to get these things amongst others after suffering through some pretty rough times. So at the moment I'm trying to convince myself that this principle of fate also applies to me.
It's been a pretty naff few months to be honest. Any men reading this please feel free to skip the next few lines and do the reading equivalent of putting your fingers in your ears and singing lalalalalala loudly. I've been having a few gynae issues for a while. My hormones have been all over the place and its been like having permanent PMT for several months. This culminated in a small gynae op just before Christmas which to be honest was one of the most horrendous experiences of my life. But that's another story! OK chaps, it's safe to come back now. Then I got a really bad chest infection which refused to go and knocked me completely sideways, and which may or may not have been Whooping Cough. While all this was going on, in the background I'd already started having the early warning signs that I was starting to relapse. This finally came to a head and I eventually had to admit defeat and submit to treatment.
Throughout all of this, or maybe because of it, coupled with some pretty nasty drugs, and alongside other bits and pieces that were going on in my life, I've been at an all time low emotionally. I really can't put my finger on why, and I don't know what to do to make it stop either. I've never experienced anything like it, and I sure as hell intend never to again once I get rid of it this time. Don't get me wrong, I get down from time to time, it's only natural, but I normally have a statute of limitations on misery. I allow myself 3 - 5 days (depending on the severity of the situation) of wallowing in self pity, then give myself a good old fashioned kick up the arse and snap out of it. I've tried and tried, but no matter how big the kick up the arse I just can't snap out of it. I just don't seem to be able to find the smiley me, and the sobbing, or ratty me are never far away.
So between the emotional rollercoaster I'm on and having far too much time on my hands I've been doing a lot of thinking, probably far too much! I've over-thought a number of things, jumped to a few conclusions, and voiced a few things I probably should have kept to myself. This has resulted in a few things. I've pissed off one very good friend to the extent that I think it may be the end of our very long standing relationship. I hope not, I hope they might understand in the end, but I guess that depends on how much they valued our relationship? Only time will tell. I've also come to the conclusion that I'm bored. I'm not even sure what I'm bored with, life, work, me? I just know I need to do something to make a change, maybe it's all part of my mid life crisis? I do know I've changed a lot over the last year or so, maybe that is part of the reason for my itchy feet now. I just know there has to be more out there for me?
So back to the things happening for a reason. Maybe I've had to hit rock bottom to see the good things in life for their true value? To make me acknowledge how lucky I am to have some of the amazing people in my life that I do. To sort the wheat from the chaff? To open my eyes to what's around me? Perhaps its to give me the kick up the arse to do something more? Whether that be doing a degree, joining St John again, looking for another job, or getting better qualified to advance in my job? I obviously wasn't shortlisted for the job I applied for, so this clearly wasn't what fate had in store. But what it did do is open my eyes to other possibilities, and get me thinking about how to fill in application forms etc.
All of this has also given me the push to make changes to me too. Or continue in earnest with small changes that I had already started. I think perhaps I am bored with me too. I have lived with me for a lot of years now. I'm more determined than ever to loose more weight, and have set myself an ambitious goal of getting back not just to my pre MS weight, but to where I was when I was 30. I'll do it too, however long it takes! It has also made me a bit more aware of my own health, and looking after it. I'm determined to go as long as possible before my next relapse, and to keep my diabetes in check. I intend to be a bit more adventurous too, from hair colour to my bucket list and many things in between.
At the moment I'm not quite sure what the reasons are for what I'm going through. I'm not sure which path I'm meant to be on, or will end up on. What I do know is that I have faith that it will all eventually become clear. That all of this, and all of the other things going on around me, are preparing me for what is to come. That they are preparing the path, ready for when it's time for me to walk it.
The fact that I can acknowledge this also tells me that things must be on the up, I must be turning a corner. I can finally see that there is a light at the end of the tunnel. And thanks to some wonderful friends I have even caught a couple of glimpses of the smiley me over the last week. Only brief glimpses, but that must mean she's still there right? She hasn't disappeared forever. And if that's the case, then there really is light at the end of the tunnel!
Monday, 25 February 2013
Wednesday, 20 February 2013
At a Crossroads
So I appear to have arrived at somewhat of a crossroads in life. A few things have happened recently that have made me readdress where I am and where I'm going. I'm also in a really strange place emotionally at the moment. So given all that maybe now isn't the time to be making any major or life changing decisions?
With that in mind as I've said in a previous post I'm giving serious consideration to taking up academic study of some description. The good thing about this is registration doesn't open for another month, and it will be much nearer the summer before I can apply for my student loan, so this gives me a considerable cooling off period in which to think seriously about it. Its a huge commitment to make for 9 months a year for the next 6 years, and a huge financial commitment too. It also gives me a chance to check out what training I can do at work that might help me make a positive change.
A combination of insomnia and not being able to get around or do much has given me far too much time on my hands. This along with all of the other stuff is a dangerous combination. So the other night I found myself mooching around the internet and before I knew where I was I was filling in a job application form. I can't quite believe I did it, I hit send. I don't apply for jobs I really want, let alone something I see on a whim. I don't think for a minute I'll get short listed, but if I do I will go for the interview. The problem starts if I get offered it. Is this really the right time to be making a decision like that.
The other really bizarre thing about what I've done is that the job is smack bang in the middle of a huge city, and not the one I live in. Anyone who knows me will know I hate driving, especially on the motorway, and especially in rush hour traffic in big cities. I'm a very nervous driver. Getting the job would mean having to do all of the above things that I hate with a passion, and add well over an hour of traveling to my day. Why would I do that? Its not even any more money. its the same grade.
This is one of those times when I'm going to trust in fate. If its meant to be, it will be, if it's not, it won't. Be gentle with me and make the right decision please Fate!
C x
With that in mind as I've said in a previous post I'm giving serious consideration to taking up academic study of some description. The good thing about this is registration doesn't open for another month, and it will be much nearer the summer before I can apply for my student loan, so this gives me a considerable cooling off period in which to think seriously about it. Its a huge commitment to make for 9 months a year for the next 6 years, and a huge financial commitment too. It also gives me a chance to check out what training I can do at work that might help me make a positive change.
A combination of insomnia and not being able to get around or do much has given me far too much time on my hands. This along with all of the other stuff is a dangerous combination. So the other night I found myself mooching around the internet and before I knew where I was I was filling in a job application form. I can't quite believe I did it, I hit send. I don't apply for jobs I really want, let alone something I see on a whim. I don't think for a minute I'll get short listed, but if I do I will go for the interview. The problem starts if I get offered it. Is this really the right time to be making a decision like that.
The other really bizarre thing about what I've done is that the job is smack bang in the middle of a huge city, and not the one I live in. Anyone who knows me will know I hate driving, especially on the motorway, and especially in rush hour traffic in big cities. I'm a very nervous driver. Getting the job would mean having to do all of the above things that I hate with a passion, and add well over an hour of traveling to my day. Why would I do that? Its not even any more money. its the same grade.
This is one of those times when I'm going to trust in fate. If its meant to be, it will be, if it's not, it won't. Be gentle with me and make the right decision please Fate!
C x
Tuesday, 19 February 2013
In Good Company
Today did me the world of good! Did I do anything fabulous.......No! I went to the hospital for my monthly drug treatment.
I'm not the sort of person who is defined by my MS, although you may be forgiven for thinking that over the last couple of months, but that's mainly because its been giving me such a hard time. Neither am I the sort of person who will actively seek out other MS'ers to be friends with or interact with. I'd rather just be friends with nice people regardless, the fact they have the same medical diagnosis as me doesn't really come into it. But every now and again its really nice, in fact I'd go so far as to say helpful, to be in the company of people who 'get it'. Don't get me wrong I love my friends and family dearly, and spending time with them, but just now and then its nice to be with other people who have been there.
There are times when you feel a complete freak, your body won't do what you want, it doesn't feel like it should, and the fatigue you experience is life sapping. Its almost impossible to explain to someone how that feels, and even if you manage it I often wonder how much they really understand. Fatigue for one thing is something you can never ever understand unless you have really experienced it. Most people think they have, and think they get it, they think its just a normal exhaustion type feeling...... it's not! Its indescribable! I thought I got it before I had MS, oh boy how wrong I was.
I'm still having a bit of a rough time with the MS business at the moment. Some symptoms I've had before, some new. Most of which I don't even talk about, whats the point. One of the things I'm really struggling with this time, compounded by the steroids, is mood. Another thing I've never experienced before is loss of appetite, in fact normally I'm completely the opposite.
I have my regular treatment with a couple of lovely ladies, one of which I've become quite good friends with over time. We keep in touch by text etc outside of the hospital. She has also sadly recently relapsed, and had steroids. So she really does know just where I am at the moment. We arrived and started chatting about how we were doing, what we've been up to etc. Imagine my surprise when she started talking about how dreadful her mood is at the moment, how she's either crying or biting everyone's head off.
She's never known anything like it. I couldn't believe it. I told her how I'd been, she's exactly the same. We both go from evil to sobbing and back numerous times over the course of the day. You can't even begin to imagine the relief, I'm not the only one. I was beginning to think I was going mad, thought I might have to get help. Then I talked about my appetite, or lack of it, and how normally the steroids make me ravenous, guess what, she's the same. I could have jumped for joy! Well mentally anyway, not sure the body is quite up to jumping at the moment. It was so good to talk to someone that gets it! You don't have to explain how you feel, they know, they've been there.
We even managed to have a bit of a giggle, I haven't done that for weeks! The atmosphere in the unit was lovely today, mainly due to the right staff being on, so that helped too. But just briefly I found the smiley me again, she made a flash of an appearance. At least I know she's not gone forever!
C x
I'm not the sort of person who is defined by my MS, although you may be forgiven for thinking that over the last couple of months, but that's mainly because its been giving me such a hard time. Neither am I the sort of person who will actively seek out other MS'ers to be friends with or interact with. I'd rather just be friends with nice people regardless, the fact they have the same medical diagnosis as me doesn't really come into it. But every now and again its really nice, in fact I'd go so far as to say helpful, to be in the company of people who 'get it'. Don't get me wrong I love my friends and family dearly, and spending time with them, but just now and then its nice to be with other people who have been there.
There are times when you feel a complete freak, your body won't do what you want, it doesn't feel like it should, and the fatigue you experience is life sapping. Its almost impossible to explain to someone how that feels, and even if you manage it I often wonder how much they really understand. Fatigue for one thing is something you can never ever understand unless you have really experienced it. Most people think they have, and think they get it, they think its just a normal exhaustion type feeling...... it's not! Its indescribable! I thought I got it before I had MS, oh boy how wrong I was.
I'm still having a bit of a rough time with the MS business at the moment. Some symptoms I've had before, some new. Most of which I don't even talk about, whats the point. One of the things I'm really struggling with this time, compounded by the steroids, is mood. Another thing I've never experienced before is loss of appetite, in fact normally I'm completely the opposite.
I have my regular treatment with a couple of lovely ladies, one of which I've become quite good friends with over time. We keep in touch by text etc outside of the hospital. She has also sadly recently relapsed, and had steroids. So she really does know just where I am at the moment. We arrived and started chatting about how we were doing, what we've been up to etc. Imagine my surprise when she started talking about how dreadful her mood is at the moment, how she's either crying or biting everyone's head off.
She's never known anything like it. I couldn't believe it. I told her how I'd been, she's exactly the same. We both go from evil to sobbing and back numerous times over the course of the day. You can't even begin to imagine the relief, I'm not the only one. I was beginning to think I was going mad, thought I might have to get help. Then I talked about my appetite, or lack of it, and how normally the steroids make me ravenous, guess what, she's the same. I could have jumped for joy! Well mentally anyway, not sure the body is quite up to jumping at the moment. It was so good to talk to someone that gets it! You don't have to explain how you feel, they know, they've been there.
We even managed to have a bit of a giggle, I haven't done that for weeks! The atmosphere in the unit was lovely today, mainly due to the right staff being on, so that helped too. But just briefly I found the smiley me again, she made a flash of an appearance. At least I know she's not gone forever!
C x
Friday, 15 February 2013
Back to school
I've been thinking for a while about maybe doing some sort of studying again. It will be an uphill struggle, not having done any serious academic work for over 20 years. Don't get me wrong I've done bits and pieces related to my job. NVQ3, NVQ assessors award, Moving and Handling trainer, and other bits and pieces that have required me writing and studying various things. But none of them really serious hard stuff.
As you may have read in other bits of my blog I'm at a bit of a crossroads. Maybe its my age. Perhaps its my body clock ticking? Telling me that if I'm going to do something I'd better do something about it soon? I was talking to a good friend a couple of weeks ago, and she's very much in the same place as me. Its not that I don't enjoy my job, I do! I also work with a fab bunch of people, and I wouldn't change that for the world. But I'm bored! There I've said it! I miss the thrill of the stuff I used to do!
I'm frustrated too! The ongoing political and financial situation have changed the job. Changes in the powers that be have changed the job. Once upon a time we could see a problem, or identify a need, and find a solution. Don't get me wrong we had to be able to stack up the financial equation, and everything else. But if we could argue the case and had enough evidence to back up what we were saying, and it made financial sense we did it! Now we come up with a solution, it goes up the chain of command, lands on a desk and stays there. Nothing ever seems to move forward. Then we're told its not what they want, or that there are aspects about it that aren't right, great tell us what you want....... hmmmmm there in lies the problem, they don't know. No steer, no direction, just no!
So is it time for a change? If so what? The things I'd really like to do I can't, because of my bloody MS! I want to be a nurse, I should have done it years ago when I had the chance! I want to be an A&E or ITU nurse! Moving on....... My friend incidentally wants a complete change, she wants to run a coffee shop. Maybe I could bake cakes for her? This was all brought sharply into focus the other day when the teen asked, out of the blue, if I could choose any job what would my perfect job be.
So what can I do to ease the boredom? The teen is thinking about starting to do St John. I used to really enjoy that! So I've started thinking again, maybe that might capture my interest a little, give me something to challenge me a little? The problem is my bloody MS, will that get in the way again? Maybe I'll look into it?
Which brings me to the last option, a couple of nights ago I had a flash of inspiration - study? I decided to Google a few things, started off thinking maybe I could go and do something at night school, but nothing really grabbed me? Ended up on the Open University website. Do I really have the commitment to do a degree at my age? Do I have the time? Can I commit to 6 years of study, and £15K of debt in student loan? Am I up to it? The final question then is what to study? What was the first thing I clicked on when the options came up....... Science!
Lots to think about there I think.........
C xx
As you may have read in other bits of my blog I'm at a bit of a crossroads. Maybe its my age. Perhaps its my body clock ticking? Telling me that if I'm going to do something I'd better do something about it soon? I was talking to a good friend a couple of weeks ago, and she's very much in the same place as me. Its not that I don't enjoy my job, I do! I also work with a fab bunch of people, and I wouldn't change that for the world. But I'm bored! There I've said it! I miss the thrill of the stuff I used to do!
I'm frustrated too! The ongoing political and financial situation have changed the job. Changes in the powers that be have changed the job. Once upon a time we could see a problem, or identify a need, and find a solution. Don't get me wrong we had to be able to stack up the financial equation, and everything else. But if we could argue the case and had enough evidence to back up what we were saying, and it made financial sense we did it! Now we come up with a solution, it goes up the chain of command, lands on a desk and stays there. Nothing ever seems to move forward. Then we're told its not what they want, or that there are aspects about it that aren't right, great tell us what you want....... hmmmmm there in lies the problem, they don't know. No steer, no direction, just no!
So is it time for a change? If so what? The things I'd really like to do I can't, because of my bloody MS! I want to be a nurse, I should have done it years ago when I had the chance! I want to be an A&E or ITU nurse! Moving on....... My friend incidentally wants a complete change, she wants to run a coffee shop. Maybe I could bake cakes for her? This was all brought sharply into focus the other day when the teen asked, out of the blue, if I could choose any job what would my perfect job be.
So what can I do to ease the boredom? The teen is thinking about starting to do St John. I used to really enjoy that! So I've started thinking again, maybe that might capture my interest a little, give me something to challenge me a little? The problem is my bloody MS, will that get in the way again? Maybe I'll look into it?
Which brings me to the last option, a couple of nights ago I had a flash of inspiration - study? I decided to Google a few things, started off thinking maybe I could go and do something at night school, but nothing really grabbed me? Ended up on the Open University website. Do I really have the commitment to do a degree at my age? Do I have the time? Can I commit to 6 years of study, and £15K of debt in student loan? Am I up to it? The final question then is what to study? What was the first thing I clicked on when the options came up....... Science!
Lots to think about there I think.........
C xx
Tuesday, 12 February 2013
The Crash
Its been a few days since I reported in. I did actually manage to get some sleep on Thursday night, managed about 4 and a half hours. You'd think after going so long without I'd have slept for England, but alas this is not to be. In fact the most I've managed was last night, and that was probably about 6 hours in total, broken several times however.
I was expecting the worst to happen on Friday, but I felt better than I expected, things started to go down hill on Friday evening. Saturday and Sunday were both written off, I couldn't even sit up for more than about 20 minutes. So both days were spent on the sofa, if only I'd been able to sleep I wouldn't have minded so much. Instead I had an NCIS marathon, thank goodness for Sky! Back to back episodes all afternoon both days, not sure the teen was quite so impressed.
Throughout it all I still felt fairly positive however, which surprised me, especially as I felt so rough. I was hoping I'd turned the corner. Monday was a better day, in fact I managed to be upright for large portions of the day, breakthrough. I didn't do anything, but even so just sitting up was nice. Felt a bit light headed again in the afternoon, so had a lie down, but I was happy with the improvement.
Then I got up this morning, after having slept too. My positivity evaporated while I was asleep! I felt rough again, and on top of that I just wanted to cry. I'm guessing this is the crash that they warn you about. I do feel cheated as I didn't get the euphoria and now it looks like I'm getting the crash anyway. Please let that be all that it is. I really can't keep feeling like this. Its beyond a joke now. I have lunged from ranty, to snappy, via down-right evil and back to sobbing for most of the day. And all of that in the space of an hour sometimes.
I can't be like this. I'm the happy go lucky one that keeps everyone else's spirits up. I'm the class clown, the one who always has a smile. The one that's just a little bit silly when its needed, that makes people laugh, Thats what I do, who I am. If I can't do that, what is my purpose in life any more?
C xx
I was expecting the worst to happen on Friday, but I felt better than I expected, things started to go down hill on Friday evening. Saturday and Sunday were both written off, I couldn't even sit up for more than about 20 minutes. So both days were spent on the sofa, if only I'd been able to sleep I wouldn't have minded so much. Instead I had an NCIS marathon, thank goodness for Sky! Back to back episodes all afternoon both days, not sure the teen was quite so impressed.
Throughout it all I still felt fairly positive however, which surprised me, especially as I felt so rough. I was hoping I'd turned the corner. Monday was a better day, in fact I managed to be upright for large portions of the day, breakthrough. I didn't do anything, but even so just sitting up was nice. Felt a bit light headed again in the afternoon, so had a lie down, but I was happy with the improvement.
Then I got up this morning, after having slept too. My positivity evaporated while I was asleep! I felt rough again, and on top of that I just wanted to cry. I'm guessing this is the crash that they warn you about. I do feel cheated as I didn't get the euphoria and now it looks like I'm getting the crash anyway. Please let that be all that it is. I really can't keep feeling like this. Its beyond a joke now. I have lunged from ranty, to snappy, via down-right evil and back to sobbing for most of the day. And all of that in the space of an hour sometimes.
I can't be like this. I'm the happy go lucky one that keeps everyone else's spirits up. I'm the class clown, the one who always has a smile. The one that's just a little bit silly when its needed, that makes people laugh, Thats what I do, who I am. If I can't do that, what is my purpose in life any more?
C xx
Thursday, 7 February 2013
The day after.....
So the morning after the night before, or more accurately the night after the morning before? I have now survived 88 hours on less than 2 hours sleep! Surely I must sleep tonight? I'm hoping so! And I did fall asleep on the sofa just now, even if it was only for 10 minutes? But that must be a good omen?
My obsession with my rapid weight gain continues!! As does my record of gaining more ounces than I've had minutes of sleep! Although I only gained 2 pounds today, making it 8 in three days, how does that happen? My friend has now ordered me to step away from the Wii Fit and stop obsessing! What will be will be, and I can worry about it when I'm better? I'm hoping that a good proportion of it is water retention and I won't have to live on lettuce for too long?
I strangely feel a little more positive today, bizarre considering my sleep deprivation. I suspect part of the reason is that now the steroids are done I'm not worrying about what might happen, just dealing with the consequences day by day! I know it will get worse before it gets better, but I'm dealing with it? I'm taking all the precautions I can to deal with some of the stuff I know will happen, and just riding it out!
I just hope the post steroid crash doesn't undo all my positivity again! Not sure I want to go back to that place? I had a brief exchange with a friend who now lives in Canada earlier, she told me I'm one tough cookie, of course I'll get through it! Lol If only she'd seen me the last few weeks she might feel different? But then she did see me get through it all when I was first diagnosed? Maybe she's wiser than I think? So that will be my mantra, I'm going to be that tough cookie again!
In other news I haven't really managed much at all today. I wrapped the teens birthday pressies ready for tomorrow and spent most of the day trying not to eat. That itself was exhausting and took tremendous effort I can tell you! But was fairly successful on the whole. Managed not to eat the cat, despite him being very still for long periods, and still on the same packet of biscuits that I opened yesterday! There's still some left too! The diet police will be proud if they're watching!
Now to try and sleep! Wish me luck......
C xx
My obsession with my rapid weight gain continues!! As does my record of gaining more ounces than I've had minutes of sleep! Although I only gained 2 pounds today, making it 8 in three days, how does that happen? My friend has now ordered me to step away from the Wii Fit and stop obsessing! What will be will be, and I can worry about it when I'm better? I'm hoping that a good proportion of it is water retention and I won't have to live on lettuce for too long?
I strangely feel a little more positive today, bizarre considering my sleep deprivation. I suspect part of the reason is that now the steroids are done I'm not worrying about what might happen, just dealing with the consequences day by day! I know it will get worse before it gets better, but I'm dealing with it? I'm taking all the precautions I can to deal with some of the stuff I know will happen, and just riding it out!
I just hope the post steroid crash doesn't undo all my positivity again! Not sure I want to go back to that place? I had a brief exchange with a friend who now lives in Canada earlier, she told me I'm one tough cookie, of course I'll get through it! Lol If only she'd seen me the last few weeks she might feel different? But then she did see me get through it all when I was first diagnosed? Maybe she's wiser than I think? So that will be my mantra, I'm going to be that tough cookie again!
In other news I haven't really managed much at all today. I wrapped the teens birthday pressies ready for tomorrow and spent most of the day trying not to eat. That itself was exhausting and took tremendous effort I can tell you! But was fairly successful on the whole. Managed not to eat the cat, despite him being very still for long periods, and still on the same packet of biscuits that I opened yesterday! There's still some left too! The diet police will be proud if they're watching!
Now to try and sleep! Wish me luck......
C xx
Wednesday, 6 February 2013
Final Day - Steroid Infusion
Well finally the last day is out of the way!
I'd love to say it went smoothly, but this is me. It all seemed to be going so well, the cannula had stayed in for the three days and appeared to flush well when I arrived. The infusion though had other ideas. It dripped a bit then decided to give up the ghost, it was really sore and my hand was getting puffy, the conclusion was reached that it wasn't patent and would need changing. And so began the task of finding another vein that would play ball. It wasn't so bad I guess, just took 4 goes and she was in. Even this vein wasn't the most co-operative, would drip haphazardly and stopped on a whim. In the end she had to leave it fully open, against her better judgement, to get it to go through at all. But it did in the end and I was finally on the way home.
Mum was on chauffeuring duties today, and stopped at the shop for me to grab a sandwich on the way home. I almost had to be restrained to stop me buying the entire biscuit section, the munchies have well and truly kicked in today. I had managed to be quite good yesterday and ate relatively small amounts really. That hasn't stopped me putting on another 3 pounds in 24 hours, that makes 6 pounds in 48 hours. Maybe I should hang onto the fat clothes after all? I'll be on two lettuce leaves a day for the next three months when this is over, just to get back to where I'd started. I have a new bloody dress to get into for a party don't you know!
I've now had the sum total of about an hours sleep in about 60 hours, and they were in the form of three 20 minute or so cat naps. I'd better manage a bit of sleep tonight or tomorrow isn't going to be pretty. To be honest its not very pretty now to be fair. Having said that I'm pretty calm really for someone who feels like a bear with a sore head.
And then there's the 6 pounds I've gained in 48 hours........ I've actually gained more ounces than I've had minutes sleep! I am totally aware that I'm obsessing a tad, I do apologise! But so would you if you were increasing in size at such a rate!
Some of the other less pleasant effects are starting to kick in now too. I can feel some swelling starting already, my eyes are starting to feel tighter and my rings definitely are. I'm also starting to get dizzy spells and my chest is very definitely tighter. My taste buds are now completely destroyed, and everything just tastes the same.......dreadful!
I'm still waiting for the euphoria. Although I may just take the fact that I'm on day three with no sleep and I haven't killed anyone yet as a win. I did say yet though, I was on my best behaviour at the hospital and haven't been exposed to any humans since arriving home. They have just come home though, so all bets could be off?
On the up side this really has made me see what lovely friends I have. I've had so many messages wishing me luck, checking up on me and generally offering to do anything I need, no matter how big or small. Also offers to take me out and cheer me up again once I'm on the mend. It's made me realise how lucky I am to have so many wonderful people in my life. Its also brought it home who is there for me and who really doesn't give a flying one, regardless of the times I've been there for them over the years. That's a bitter pill to swallow!
C xx
I'd love to say it went smoothly, but this is me. It all seemed to be going so well, the cannula had stayed in for the three days and appeared to flush well when I arrived. The infusion though had other ideas. It dripped a bit then decided to give up the ghost, it was really sore and my hand was getting puffy, the conclusion was reached that it wasn't patent and would need changing. And so began the task of finding another vein that would play ball. It wasn't so bad I guess, just took 4 goes and she was in. Even this vein wasn't the most co-operative, would drip haphazardly and stopped on a whim. In the end she had to leave it fully open, against her better judgement, to get it to go through at all. But it did in the end and I was finally on the way home.
Mum was on chauffeuring duties today, and stopped at the shop for me to grab a sandwich on the way home. I almost had to be restrained to stop me buying the entire biscuit section, the munchies have well and truly kicked in today. I had managed to be quite good yesterday and ate relatively small amounts really. That hasn't stopped me putting on another 3 pounds in 24 hours, that makes 6 pounds in 48 hours. Maybe I should hang onto the fat clothes after all? I'll be on two lettuce leaves a day for the next three months when this is over, just to get back to where I'd started. I have a new bloody dress to get into for a party don't you know!
I've now had the sum total of about an hours sleep in about 60 hours, and they were in the form of three 20 minute or so cat naps. I'd better manage a bit of sleep tonight or tomorrow isn't going to be pretty. To be honest its not very pretty now to be fair. Having said that I'm pretty calm really for someone who feels like a bear with a sore head.
And then there's the 6 pounds I've gained in 48 hours........ I've actually gained more ounces than I've had minutes sleep! I am totally aware that I'm obsessing a tad, I do apologise! But so would you if you were increasing in size at such a rate!
Some of the other less pleasant effects are starting to kick in now too. I can feel some swelling starting already, my eyes are starting to feel tighter and my rings definitely are. I'm also starting to get dizzy spells and my chest is very definitely tighter. My taste buds are now completely destroyed, and everything just tastes the same.......dreadful!
I'm still waiting for the euphoria. Although I may just take the fact that I'm on day three with no sleep and I haven't killed anyone yet as a win. I did say yet though, I was on my best behaviour at the hospital and haven't been exposed to any humans since arriving home. They have just come home though, so all bets could be off?
On the up side this really has made me see what lovely friends I have. I've had so many messages wishing me luck, checking up on me and generally offering to do anything I need, no matter how big or small. Also offers to take me out and cheer me up again once I'm on the mend. It's made me realise how lucky I am to have so many wonderful people in my life. Its also brought it home who is there for me and who really doesn't give a flying one, regardless of the times I've been there for them over the years. That's a bitter pill to swallow!
C xx
Tuesday, 5 February 2013
Day 2 - Steroid Infusion
Well I got through day 2! My second steroid infusion. I'm feeling the effects already. I didn't sleep at all last night. I had planned to go to bed, try and get to sleep and if not I was going to get up and come downstairs. I planned to get settled in on the sofa with a duvet and watch some of the TV programmes I have taped.
I went to bed as planned. and read for a while. Settled myself down convinced I'd drop off as I was feeling so exhausted, but no! My brain had other ideas, that was as wide awake as my body was exhausted! I was just too tired to get up too, I was lying there convinced I'd fall asleep at any minute and just couldn't bring myself to move. Well until the alarm went off that is. I even tried going to bed for a couple of hours this afternoon, but alas sleep was not to be then either. In fact fueled by a brief steroid induced burst of energy I sorted out one small section of my wardrobe. I dispensed with some fat clothes that I am determined I will never need again. Have singled out a few bits to sell on Ebay too. It lasted about 30 minutes, then I crashed again afterwards, brain writing cheques my body can't cash again!
Talking of fat clothes, I may need them again at the rate I'm going! I've put 3 pounds on overnight! Three bloody pounds in 24 hours, how does that happen? Another of the effects of the steroids. Do you see now why I hate them so much. Think I've started retaining fluids already, my rings are starting to get a bit tighter, and I can feel my jaw tightening. Another unwanted effect is everything now tastes horrid too, I can't even properly enjoy a cup of tea, it just doesn't taste right. Those of you who know me well will know what a tragedy this really is!! I love my tea more than almost anything else!
Did I mention I gained 3 pounds overnight........
I'm feeling pretty rough, and I know there is worse to come. I'm still waiting for the promised euphoria, I may have to sue them for breech of contract? I have to admit to my mood not being quite so low today, so maybe that's as close to euphoria as I'm going to get this time, maybe I should be thankful for small mercies? I'm so dreading the crash that comes afterwards too, if I was that down before how low can I go after? Maybe all sharp implements and drugs should be kept under lock and key? lol
A friend popped round tonight just for a quick hello, as she was dropping off her hubbs to go to the footie with my hubbs. I made her laugh, told her I refused to be depressed! I said I don't care how many of the symptoms of it I have, or how bad I get, I'm just not having it! I refuse and no-one can make me, its just not happening! She seems to think as long as I have that mind set I'll never let it really get to me, I hope she's right. She gave me a big hug and informed me that I've had my quota of sympathy now. She will give me a week post treatment to wallow in self pity then she's coming to visit with cream cakes and a huge kick up the arse! I have a feeling that may be just what the doctor ordered!
I went to bed as planned. and read for a while. Settled myself down convinced I'd drop off as I was feeling so exhausted, but no! My brain had other ideas, that was as wide awake as my body was exhausted! I was just too tired to get up too, I was lying there convinced I'd fall asleep at any minute and just couldn't bring myself to move. Well until the alarm went off that is. I even tried going to bed for a couple of hours this afternoon, but alas sleep was not to be then either. In fact fueled by a brief steroid induced burst of energy I sorted out one small section of my wardrobe. I dispensed with some fat clothes that I am determined I will never need again. Have singled out a few bits to sell on Ebay too. It lasted about 30 minutes, then I crashed again afterwards, brain writing cheques my body can't cash again!
Talking of fat clothes, I may need them again at the rate I'm going! I've put 3 pounds on overnight! Three bloody pounds in 24 hours, how does that happen? Another of the effects of the steroids. Do you see now why I hate them so much. Think I've started retaining fluids already, my rings are starting to get a bit tighter, and I can feel my jaw tightening. Another unwanted effect is everything now tastes horrid too, I can't even properly enjoy a cup of tea, it just doesn't taste right. Those of you who know me well will know what a tragedy this really is!! I love my tea more than almost anything else!
Did I mention I gained 3 pounds overnight........
I'm feeling pretty rough, and I know there is worse to come. I'm still waiting for the promised euphoria, I may have to sue them for breech of contract? I have to admit to my mood not being quite so low today, so maybe that's as close to euphoria as I'm going to get this time, maybe I should be thankful for small mercies? I'm so dreading the crash that comes afterwards too, if I was that down before how low can I go after? Maybe all sharp implements and drugs should be kept under lock and key? lol
A friend popped round tonight just for a quick hello, as she was dropping off her hubbs to go to the footie with my hubbs. I made her laugh, told her I refused to be depressed! I said I don't care how many of the symptoms of it I have, or how bad I get, I'm just not having it! I refuse and no-one can make me, its just not happening! She seems to think as long as I have that mind set I'll never let it really get to me, I hope she's right. She gave me a big hug and informed me that I've had my quota of sympathy now. She will give me a week post treatment to wallow in self pity then she's coming to visit with cream cakes and a huge kick up the arse! I have a feeling that may be just what the doctor ordered!
Monday, 4 February 2013
Day 1 steroid infusion
As the title suggests I had the first of my steroid infusions today. They have decided I can have the 3 days, so its 1000mg a day for me. If that sounds like a lot, that's because it is! lol For those of you in the know, and remotely interested, its a Methylprednisolone infusion.
My relapse has reached a particularly low point. I'm using 2 sticks, and really struggling. I'm so fatigued its not even funny, just want to sleep all the time, but then can't get good quality sleep just keep waking all the time. Now I've had the steroids I doubt I'll manage sleep at all! I'm so fed up of living with me it's the one thing I crave, just to get away from myself for a few hours. The relapse brings with it lots of unpleasant effects, the loss of sensation, loss of power, reduced mobility, lots of pain this time and a few other very unpleasant but quite personal effects I'd rather not put out in public. Any MS'ers reading this will probably be able to guess where I'm coming from.
The last time I had the steroids they caused diabetes, so I have the added joy this time of expecting my glucose levels to go haywire. Had a good start on this front, pre infusion BM was 5.7, well chuffed!! Immediate post infusion BM 6.4, even more chuffed!!! Got home and thought I'd be a good girl and check it, 10.7 at 1.30, followed by 12.5 at 3 pm and 19.1 at 4 pm. I'm almost scared to do it again! lol
I feel pretty rough already, I normally feel OK while I'm having it, and wait till the infusions are finished to start feeling really crap. I'm waiting patiently for the euphoria they've promised me too. Please, anything to kick my butt out of this dreadful low that I'm in. I'm about half a heart beat from throwing in the towel. I just don't know how much more I can take. For the first time since I had this bloody cruel disease I could quite happily go to sleep and not wake up again. In fact if it wasn't for my wonderful family and amazing friends I might consider doing just that. They are the only things keeping me afloat right now. I love them far too much, and life is precious right? But really enough is enough now!
I was really good today, I managed to paint on a bit of a smile and be my usual naughty self a little while I was in the unit. But I've used that all up for the day now! I need to keep some in the bank for tomorrow after all. I just want someone to hug me and never let go, to tell me its all going to be fine. To take away the pain and take away this dreadful low feeling I can't seem to shift. When this infusion is done it will be very tempting to just go to bed to sleep it off and not have any contact with the outside world........ ever again!
My relapse has reached a particularly low point. I'm using 2 sticks, and really struggling. I'm so fatigued its not even funny, just want to sleep all the time, but then can't get good quality sleep just keep waking all the time. Now I've had the steroids I doubt I'll manage sleep at all! I'm so fed up of living with me it's the one thing I crave, just to get away from myself for a few hours. The relapse brings with it lots of unpleasant effects, the loss of sensation, loss of power, reduced mobility, lots of pain this time and a few other very unpleasant but quite personal effects I'd rather not put out in public. Any MS'ers reading this will probably be able to guess where I'm coming from.
The last time I had the steroids they caused diabetes, so I have the added joy this time of expecting my glucose levels to go haywire. Had a good start on this front, pre infusion BM was 5.7, well chuffed!! Immediate post infusion BM 6.4, even more chuffed!!! Got home and thought I'd be a good girl and check it, 10.7 at 1.30, followed by 12.5 at 3 pm and 19.1 at 4 pm. I'm almost scared to do it again! lol
I feel pretty rough already, I normally feel OK while I'm having it, and wait till the infusions are finished to start feeling really crap. I'm waiting patiently for the euphoria they've promised me too. Please, anything to kick my butt out of this dreadful low that I'm in. I'm about half a heart beat from throwing in the towel. I just don't know how much more I can take. For the first time since I had this bloody cruel disease I could quite happily go to sleep and not wake up again. In fact if it wasn't for my wonderful family and amazing friends I might consider doing just that. They are the only things keeping me afloat right now. I love them far too much, and life is precious right? But really enough is enough now!
I was really good today, I managed to paint on a bit of a smile and be my usual naughty self a little while I was in the unit. But I've used that all up for the day now! I need to keep some in the bank for tomorrow after all. I just want someone to hug me and never let go, to tell me its all going to be fine. To take away the pain and take away this dreadful low feeling I can't seem to shift. When this infusion is done it will be very tempting to just go to bed to sleep it off and not have any contact with the outside world........ ever again!
Saturday, 2 February 2013
Lower than a snakes belly
Advisory warning - this is not going to be a positive post in any way, so if you do find your way here its probably best to stop now and move on.
My reason for writing this is a bit like my reason for starting the blog really, so I can look back and see where I was a various points in time. Right now I'm pretty low, and when I have nothing good to say I generally try to say nothing, but I decided I needed to get something down so I can look at it in the future and learn to deal with it better next time.
As the title suggests, right now I'm feeling lower than a snakes belly. I'm currently smack bang in the middle of a particularly unpleasant MS relapse. It's affected my legs as is often the case, I have hardly any feeling below my waist at the moment, my knees are like jelly, and thanks to this my mobility is severely compromised. I'm having to use two crutches for probably only about the third time since I've had this bloody disease. My arms are affected too, with loss of feeling and weakness. I have the lower backache that often comes with a relapse, but I also have quite a lot of other random pain too. It strikes in all different places, at different times, just to keep me on my toes. Normal painkillers don't really do much as its nerve pain, and to top it all getting comfy to get the sleep I so desperately need is virtually impossible. I am constantly tired, but its more than just normal tired, its proper full on exhausted fatigue. I can't even begin to describe what that feels like. Oh the joys of MS!
On top of physical symptoms, I am the most emotionally unstable I think I have ever been. I'm not completely sure whether this is entirely or partially related to the MS, or a combination of all the factors that are currently affecting my life. What I do know is that I can barely go more than about 20 minutes without feeling like I want to burst into tears, and often actually doing it. Tears are never very far from the surface and can break through at any minute. Its like a huge cloud of despair is sitting above my head. I will get through it, I know that, I'm just not sure how at the moment.
I cried in Asda this morning. Bumped into a friend and she was nice to me...... and off I went.
I know I must be feeling bad because she told me I'd lost loads of weight and that I looked great, and I just shrugged. Normally that would give me a real boost and make me feel great. She said other nice things too, I just find it hard to accept. A friend yesterday gave me a similar talking to, and said some similar things, I struggled with that too. As you can probably imagine there were tears also. But I just don't see who they seem to see, that's not the girl in my mirror. The girl in my mirror is useless, worthless, unworthy of the lovely people around me. Fat, frumpy, forty-something and pretty much unlovable!
My reason for writing this is a bit like my reason for starting the blog really, so I can look back and see where I was a various points in time. Right now I'm pretty low, and when I have nothing good to say I generally try to say nothing, but I decided I needed to get something down so I can look at it in the future and learn to deal with it better next time.
As the title suggests, right now I'm feeling lower than a snakes belly. I'm currently smack bang in the middle of a particularly unpleasant MS relapse. It's affected my legs as is often the case, I have hardly any feeling below my waist at the moment, my knees are like jelly, and thanks to this my mobility is severely compromised. I'm having to use two crutches for probably only about the third time since I've had this bloody disease. My arms are affected too, with loss of feeling and weakness. I have the lower backache that often comes with a relapse, but I also have quite a lot of other random pain too. It strikes in all different places, at different times, just to keep me on my toes. Normal painkillers don't really do much as its nerve pain, and to top it all getting comfy to get the sleep I so desperately need is virtually impossible. I am constantly tired, but its more than just normal tired, its proper full on exhausted fatigue. I can't even begin to describe what that feels like. Oh the joys of MS!
On top of physical symptoms, I am the most emotionally unstable I think I have ever been. I'm not completely sure whether this is entirely or partially related to the MS, or a combination of all the factors that are currently affecting my life. What I do know is that I can barely go more than about 20 minutes without feeling like I want to burst into tears, and often actually doing it. Tears are never very far from the surface and can break through at any minute. Its like a huge cloud of despair is sitting above my head. I will get through it, I know that, I'm just not sure how at the moment.
I cried in Asda this morning. Bumped into a friend and she was nice to me...... and off I went.
I know I must be feeling bad because she told me I'd lost loads of weight and that I looked great, and I just shrugged. Normally that would give me a real boost and make me feel great. She said other nice things too, I just find it hard to accept. A friend yesterday gave me a similar talking to, and said some similar things, I struggled with that too. As you can probably imagine there were tears also. But I just don't see who they seem to see, that's not the girl in my mirror. The girl in my mirror is useless, worthless, unworthy of the lovely people around me. Fat, frumpy, forty-something and pretty much unlovable!
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