Well I always knew the day would come, but I hoped that somehow, something would be pulled out of the hat, and there would be one more year. It happened so often in the past, we got just one more year, 5 years worth of them. But we had to face it, there just wasn't any money! Then I tried not to think about it, and hoped that if I didn't, the day just wouldn't arrive. But time and tide wait for no man, and the 31st March finally arrived.
The team I had spent so many happy hours at work with has finally come to an end. What started in 2005 with one coordinator, and at its peak boasted 7 dedicated staff, with another 4 helping out along the way, has wound down and bowed out. Today is a very sad day!
We have been affectionately referred to as the A team over the years, and will possibly be remembered not so affectionately by some as the enemy (hehehe). I hasten to add that these are few and far between, and mainly because we showed what could be done, and it meant they had to work just a bit harder to keep up.
We touched so many peoples lives, and they in turn touched ours. I don't just mean our 'customers', but their families, other colleagues, people from other organisations and companies, other professionals and the list goes on. At the risk of sounding cheesy (again), we managed to change peoples lives, some in a relatively small way, and others in a huge way, and pretty much all for the better too. We made mistakes along the way, but we put our hands up to them, and sorted them out. Then we learnt from them!
I feel lucky to have been part of the whole experience, and its been an amazing 5 years. I have come out the other side with several friends I didn't have before, and friends I hope I will have for life. Its been a hell of a ride at times, but however bad it got, there was always someone to give you a hug and put things into perspective. In fact at times it wasn't really like a job, it was a social gathering.
There have been a lot of tears over the last couple of days from all of us, especially yesterday and today. There have also been lots of hugs, and sharing of memories. I'm sure there will be a few more tears tomorrow when I have to walk past the office knowing they are no longer there. I shall miss them all so much. I'll also miss my little sanctuary where I escape to when it all gets too much, I'll have to sit on the loo now.
Over the years the work we achieved received national recognition, gaining awards, and has been copied by authorities across the country. We managed to save a few bob for the public purse along the way too. And now the team is sent to the archives of history. People will talk fondly of the times when the 'A team' was around to pick up the flak, Like folklore, new faces will hear tell of the things the 'A team' did. I will eventually stop crying, and when I hear their name, shall smile to myself, and remember how lucky I was to be part of it, how much richer my life is from it, and how much fun we had!
I love you all!
C x x x
Thursday, 31 March 2011
Tuesday, 29 March 2011
Back to work, and more baking!
Hello Again!
Its been an interesting week so far! I returned to work on Monday, just doing half days for a couple of weeks to ease me back gently. Its really strange turning up late and going home early, doesn't feel right, I actually feel a bit guilty if I'm honest. At the risk of everyone thinking I'm nuts, I have to say its nice to be back. Had hugs all round (well almost all, theres some you just wouldn't go there with!), and the boss told me about 20 times how good it was to have me back. Mind you I think he's just glad to have someone with a bigger naughty streak than him to take some of the heat. I behaved as it was my first day back, and didn't cause any mischief really. That situation won't last, I can't behave for too long.
We have so many new faces in the building too, its really strange. A whole new department have moved in, so it will be interesting to see what they are all like. Apparently one person has been moaning about the toilet door by their office, and demanding it be kept closed at all times. So I couldn't resist, went to that one on purpose, and made sure the door was wide open (after I'd finished of course)! OK, so maybe that classes as a little bit of mischief, but I think I may have some fun with that one.......
Driving to work was the furthest I've driven for weeks, since before my relapse actually. While I was driving home I was thinking about me driving, and realised I still can't quite believe I'm actually doing it, that they really gave me a license. I still feel like I'm doing something naughty and that I'll get caught up with eventually and found out. Just to reassure everyone, I did pass my test and do have a legitimate license, and even insurance and everything, but I sometimes catch myself and still think I'll wake up. It took me so many years to do it, I'm still adjusting to the idea! Told you all I'm bonkers.
Had my Tysabri treatment today, so a little trip to the hospital. I got there nice and early in the vain hope I'd be done and dusted nice and early, a girl can live in hope! The other woman that I'm on with now is a real strange one, so I have to make sure I have reading material. I really miss being part of the Witches of East Warwick, which was what one of the doctors nicknamed the 3 of us that used to be on together, we always had a giggle! Luckily there was another guy in who was vaguely human, and really quite sane, so I had someone to talk to. The cannula went in on the 4th go, which wasn't bad and the treatment was done and dusted, and waiting time before 12, so I should have had an early finish. But I opened my mouth and asked about some test results from last time, that was the mistake. Ended up waiting around for doctors for almost 2 hours. Apparently I'm growing some fairly unpleasant bugs and need antibiotics. If they'd realised before and had checked I wouldn't even have been treated.......Oops! It would seem that nasty bugs and immune suppressent treatment don't go well together, it would have to be me! Gave up waiting for the doc in the end, and asked the GP's surgery for the drugs, who obliged. Never a dull moment, but still smiling!
Believe it or not, more baking was done at the weekend. My Nan would be proud. We did a chocolate victoria sponge type cake this time. Hubbs said it was really nice, moist and light, praise indeed from chef! Is there no end to our talents. CC has ideas for more baking this weekend too, it could get to be a bit of a habit if I'm not careful, and I'm in real danger of turning into a proper girl, shudder at the thought!
Well its getting late and the cat is quite insistent that its bedtime, so I'd better do as I'm told. Still struggling with this British Summertime business, my body clock is screwed up enough thank you, without someone adding to its troubles. We'd better get some nice weather now to be able to take advantage of it, or there will be much stamping of feet! So whichever government department orders the weather, can you please put one of for some sun, and be quick about it please!
C x
Its been an interesting week so far! I returned to work on Monday, just doing half days for a couple of weeks to ease me back gently. Its really strange turning up late and going home early, doesn't feel right, I actually feel a bit guilty if I'm honest. At the risk of everyone thinking I'm nuts, I have to say its nice to be back. Had hugs all round (well almost all, theres some you just wouldn't go there with!), and the boss told me about 20 times how good it was to have me back. Mind you I think he's just glad to have someone with a bigger naughty streak than him to take some of the heat. I behaved as it was my first day back, and didn't cause any mischief really. That situation won't last, I can't behave for too long.
We have so many new faces in the building too, its really strange. A whole new department have moved in, so it will be interesting to see what they are all like. Apparently one person has been moaning about the toilet door by their office, and demanding it be kept closed at all times. So I couldn't resist, went to that one on purpose, and made sure the door was wide open (after I'd finished of course)! OK, so maybe that classes as a little bit of mischief, but I think I may have some fun with that one.......
Driving to work was the furthest I've driven for weeks, since before my relapse actually. While I was driving home I was thinking about me driving, and realised I still can't quite believe I'm actually doing it, that they really gave me a license. I still feel like I'm doing something naughty and that I'll get caught up with eventually and found out. Just to reassure everyone, I did pass my test and do have a legitimate license, and even insurance and everything, but I sometimes catch myself and still think I'll wake up. It took me so many years to do it, I'm still adjusting to the idea! Told you all I'm bonkers.
Had my Tysabri treatment today, so a little trip to the hospital. I got there nice and early in the vain hope I'd be done and dusted nice and early, a girl can live in hope! The other woman that I'm on with now is a real strange one, so I have to make sure I have reading material. I really miss being part of the Witches of East Warwick, which was what one of the doctors nicknamed the 3 of us that used to be on together, we always had a giggle! Luckily there was another guy in who was vaguely human, and really quite sane, so I had someone to talk to. The cannula went in on the 4th go, which wasn't bad and the treatment was done and dusted, and waiting time before 12, so I should have had an early finish. But I opened my mouth and asked about some test results from last time, that was the mistake. Ended up waiting around for doctors for almost 2 hours. Apparently I'm growing some fairly unpleasant bugs and need antibiotics. If they'd realised before and had checked I wouldn't even have been treated.......Oops! It would seem that nasty bugs and immune suppressent treatment don't go well together, it would have to be me! Gave up waiting for the doc in the end, and asked the GP's surgery for the drugs, who obliged. Never a dull moment, but still smiling!
Believe it or not, more baking was done at the weekend. My Nan would be proud. We did a chocolate victoria sponge type cake this time. Hubbs said it was really nice, moist and light, praise indeed from chef! Is there no end to our talents. CC has ideas for more baking this weekend too, it could get to be a bit of a habit if I'm not careful, and I'm in real danger of turning into a proper girl, shudder at the thought!
Well its getting late and the cat is quite insistent that its bedtime, so I'd better do as I'm told. Still struggling with this British Summertime business, my body clock is screwed up enough thank you, without someone adding to its troubles. We'd better get some nice weather now to be able to take advantage of it, or there will be much stamping of feet! So whichever government department orders the weather, can you please put one of for some sun, and be quick about it please!
C x
Thursday, 24 March 2011
Hot chocolate and memory lane this time!
Wow another blog so soon. Don't get used to it though, I'm sure being back at work will soon put paid to this blogging stuff.
I'm actually feeling quite positive, if a little tired. As the saying goes, I'm keeping my chin up. I'm also lucky to have fab friends who are keeping my spirits up too.
Saw the practice nurse yesterday about the diabetes, and feeling a bit more relaxed about it now. She gave me a monitor, so I can extract my own blood for testing to my hearts content now. But being a bit of a wuss, and definitely not doing pain, I shall resist the urge to obsess about it and keep the testing to the minimum. I have decided mornings before breakfast is probably the best time. So I took a brave pill and did it this morning, it was 12.4, so not great, but could be worse. I guess I just feel a bit more in control now, and those of you who know me will know I can be a dreadful control freak. Also have to see the nurse again in 3 weeks, so again feel like it is being monitored and not just left. I guess I'll chill out about it all after a bit, well as long as I don't have insulin anyway!
The sun shining sure helps too. Hubbs did some tidying up in the back garden, so its ready to be made pretty now. Just have to sort the fence out one side, which is coming away, and we can get things underway. Hubbs will then be tasked with giving the fence a lick of paint, while I do the table and chairs (very slowly, but they'll be finished by August!). I have checked out the nursery for plants and have decided which ones I want, so if I'm up to it next weekend I will start on my flower bags.
Went out to meet a friend today for a coffee and a gossip (well hot chocolate and tea), gotta love Starbucks! She bought me a lovely Orchid too, so I will try really really hard not to kill it. It was lovely to have a good gossip away from work. Had another trip down memory lane too, saw an old neighbour, who is a fireman, so we ended up chatting to him for ages......and people think I can talk, he beats me hands down? Made me feel a bit old too, remembering people and events from so many years ago. Don't know how him being a fireman is relevant, but its out there now.
I have now just received another invite to starbucks for tomorrow, whats a girl to do? I'm making the most of it before I'm back at work. It does help to keep the chin up too, lifes too short!
Keep smiling.......
C x
I'm actually feeling quite positive, if a little tired. As the saying goes, I'm keeping my chin up. I'm also lucky to have fab friends who are keeping my spirits up too.
Saw the practice nurse yesterday about the diabetes, and feeling a bit more relaxed about it now. She gave me a monitor, so I can extract my own blood for testing to my hearts content now. But being a bit of a wuss, and definitely not doing pain, I shall resist the urge to obsess about it and keep the testing to the minimum. I have decided mornings before breakfast is probably the best time. So I took a brave pill and did it this morning, it was 12.4, so not great, but could be worse. I guess I just feel a bit more in control now, and those of you who know me will know I can be a dreadful control freak. Also have to see the nurse again in 3 weeks, so again feel like it is being monitored and not just left. I guess I'll chill out about it all after a bit, well as long as I don't have insulin anyway!
The sun shining sure helps too. Hubbs did some tidying up in the back garden, so its ready to be made pretty now. Just have to sort the fence out one side, which is coming away, and we can get things underway. Hubbs will then be tasked with giving the fence a lick of paint, while I do the table and chairs (very slowly, but they'll be finished by August!). I have checked out the nursery for plants and have decided which ones I want, so if I'm up to it next weekend I will start on my flower bags.
Went out to meet a friend today for a coffee and a gossip (well hot chocolate and tea), gotta love Starbucks! She bought me a lovely Orchid too, so I will try really really hard not to kill it. It was lovely to have a good gossip away from work. Had another trip down memory lane too, saw an old neighbour, who is a fireman, so we ended up chatting to him for ages......and people think I can talk, he beats me hands down? Made me feel a bit old too, remembering people and events from so many years ago. Don't know how him being a fireman is relevant, but its out there now.
I have now just received another invite to starbucks for tomorrow, whats a girl to do? I'm making the most of it before I'm back at work. It does help to keep the chin up too, lifes too short!
Keep smiling.......
C x
Tuesday, 22 March 2011
Cupcakes and memory lane....
Well its been a little while since my last blog, or rant, depending on your point of view. I never give them a title till they are finished, mainly due to the fact that I never know where they will end up when I start. I just start writing, and see where it takes me. As anyone who knows me well will tell you I can talk for my country. I'm just gutted that it isn't an Olympic sport, especially with 2012 on its way.
I am pleased to say I am returning to work next week, so will probably be too tired to blog for a while. I imagine I won't be so pleased once I've been back a few days, but they are such a great bunch to work with they make it all bearable. I'm hoping there will be lots of gossip to catch up on to keep me amused for a couple of days.
What has been nice about the last week is I've been feeling a bit more human, so been able to catch up with people I don't get to see often enough. Its nice to have a bit of time to just sit and talk to people without worrying about having to be somewhere else. Also its been nice to spend time with CC and Hubbs without being totally exhausted. Although we haven't had much family time as Hubbs has been working. I've even managed to get some washing out on the line for the first time this year, so I don't care what anyone else says, I'm declaring spring to have arrived!
CC had set her heart on baking some cupcakes, so at the weekend we had a trip to Morrison's for the ingredients, and voila! We produced red velvet cupcakes no less. It all started from an advert for a baking magazine that comes with silicone bakeware, it got her thinking, then insisting on buying some silicone cupcake cases, and the rest as they say is history. The cases only cost 79p, but the whole exercise ended up costing a small fortune! But we did make very nice cakes. The problem is now, she's got a liking for it, and we have all the stuff so she wants to do it again. I'll be turning into a real girl at this rate......nah, only kidding!
I had a brief trip out on Friday to say goodbye to a colleague who was leaving. Just stayed for a glass of lemonade (I treated myself and didn't have diet, but I hadn't eaten, so figured I could manage the sugar!) and an hour before they went off for a meal. I was too shattered to go the distance, but it was nice to see people out of work. It was a real trip down memory lane too, as it is years since I was in the pub we were in. Have lots of happy memories of nights out around the area many years ago. Reminded me of people I haven't seen for years, and one or two I'm glad I don't!
So thats enough looking back, time to look forward. I'm not sure what this week will bring, but I'm sure there will be cupcakes involved somewhere, and I'm hoping there will be some sun. I really want to get out in the garden and start tidying up now ready for the nice summer I'm wishing for. I even bought some hanging flower bags today in anticipation. Not that I'm up to much more than armchair gardening at the moment, but I'm very good at delegation, so brace yerself Hubbs!
Enjoy spring springing everyone!
C x
I am pleased to say I am returning to work next week, so will probably be too tired to blog for a while. I imagine I won't be so pleased once I've been back a few days, but they are such a great bunch to work with they make it all bearable. I'm hoping there will be lots of gossip to catch up on to keep me amused for a couple of days.
What has been nice about the last week is I've been feeling a bit more human, so been able to catch up with people I don't get to see often enough. Its nice to have a bit of time to just sit and talk to people without worrying about having to be somewhere else. Also its been nice to spend time with CC and Hubbs without being totally exhausted. Although we haven't had much family time as Hubbs has been working. I've even managed to get some washing out on the line for the first time this year, so I don't care what anyone else says, I'm declaring spring to have arrived!
CC had set her heart on baking some cupcakes, so at the weekend we had a trip to Morrison's for the ingredients, and voila! We produced red velvet cupcakes no less. It all started from an advert for a baking magazine that comes with silicone bakeware, it got her thinking, then insisting on buying some silicone cupcake cases, and the rest as they say is history. The cases only cost 79p, but the whole exercise ended up costing a small fortune! But we did make very nice cakes. The problem is now, she's got a liking for it, and we have all the stuff so she wants to do it again. I'll be turning into a real girl at this rate......nah, only kidding!
I had a brief trip out on Friday to say goodbye to a colleague who was leaving. Just stayed for a glass of lemonade (I treated myself and didn't have diet, but I hadn't eaten, so figured I could manage the sugar!) and an hour before they went off for a meal. I was too shattered to go the distance, but it was nice to see people out of work. It was a real trip down memory lane too, as it is years since I was in the pub we were in. Have lots of happy memories of nights out around the area many years ago. Reminded me of people I haven't seen for years, and one or two I'm glad I don't!
So thats enough looking back, time to look forward. I'm not sure what this week will bring, but I'm sure there will be cupcakes involved somewhere, and I'm hoping there will be some sun. I really want to get out in the garden and start tidying up now ready for the nice summer I'm wishing for. I even bought some hanging flower bags today in anticipation. Not that I'm up to much more than armchair gardening at the moment, but I'm very good at delegation, so brace yerself Hubbs!
Enjoy spring springing everyone!
C x
Sunday, 13 March 2011
Diabetes anyone?
Hello to anyone who finds themselves reading this. Todays post is not a rant about anything specific, just about life in general.
Its been a bit of a difficult month or so really, suffered an MS relapse, which meant I'd been struggling with everything for a few weeks before I eventually admitted defeat and asked for help. As it gets worse and I struggle more I reach a point where I realise I can't carry on any longer and need to get treated, this came when I walked up the corridor at work and realised I couldn't feel the bottom half of my body at all, felt like I'd floated along. My fatigue levels were through the roof too, was ready to drop by about 10am, amongst other things. So like I say, I'd admitted defeat, and called the MS nurses. They agreed that I could have the steroids orally this time instead of spending most of the week in the hospital getting them IV. So I was able to work for a few extra days while they got into my system. May have pushed it a bit too far though, as by lunchtime on one Wednesday I was on the verge of collapse, so I went home and have been off ever since, almost 4 weeks now.
The steroids don't like me very much, and I always react badly to them. I had the usual swelling, end up like the Michelin Man, dizziness, and felt really really unwell. For 3 days I couldn't even sit upright for more than a few minutes, just couldn't hold my own head up without support. Went to the doctors and almost passed out in the waiting room, surprising how quickly the doc can see you when they fear you may make a mess on their floor! hehehe So I spent the majority of about 5 days in bed, for the most part sleeping. Then as the light began to appear at the end of the tunnel, and I was able to sit upright again, it was time for my monthly visit to the Day Unit for my Tysabri.
This was an eventful day to say the least, luckily my usual tysabri buddy was there to keep my spirits up, and the staff are lovely too. They did the first test of the day, and the dipstick showed my glucose levels were off the scale, but we put it down to the recent steroids throwing things out so the support worker did a BM and nearly fell off her chair when it showed 23.8. The doctor asked if I'd forgotten my insulin that morning, and how much jam I'd had on my toast, the entire pot! They asked if I'm a known diabetic, so I told them I'm actually known for not being diabetic, and so it began.
There were blood tests, more BM's and the dreaded Arterial Blood Gases. In a previous job in the emergency admissions unit I'd seen many ABG's done, and had an idea of how painful it was going to be, and boy was I not disappointed. The doctor doing it said it might be a bit sore, I'm going to show her the difference between a bit sore and ABG's if I ever see her again. Her first go missed, so she spent about 2-3 minutes digging around in my wrist for nothing. Her second go was looking like it was heading the same way, until after several minutes of digging she found what she was looking for and got the blood. I was very well behaved throughout, only cried a little bit and only swore in my head (a very lot), but it was one of the most painful things ever. Nest time they say ABG I'll be the one thats just left the building! When she finished the doc even had the cheek to say she was sweating, I told her she should be sat where I was!
She then came back to add insult to injury (there was injury I had massive black bruising) and said they would be admitting me to hospital. I pointed out that this would not be necessary and eventually she came round to my way of thinking, after much begging. The upshot was, after being seen by the diabetic registrar, that the steroids have done something to me and I am now diabetic. So keeping everything crossed that it can be controlled by tablets.
Hows that for service though, good old NHS! You go for one thing and they send you home the same day with diabetes to add to your repertoire!
Well this went in a totally different direction from the one I had in mind when I started - go figure. So thats enough of my woes for now. Hope you are having a good Sunday, or whatever other day it may be when you read this!
Take care
C x
Its been a bit of a difficult month or so really, suffered an MS relapse, which meant I'd been struggling with everything for a few weeks before I eventually admitted defeat and asked for help. As it gets worse and I struggle more I reach a point where I realise I can't carry on any longer and need to get treated, this came when I walked up the corridor at work and realised I couldn't feel the bottom half of my body at all, felt like I'd floated along. My fatigue levels were through the roof too, was ready to drop by about 10am, amongst other things. So like I say, I'd admitted defeat, and called the MS nurses. They agreed that I could have the steroids orally this time instead of spending most of the week in the hospital getting them IV. So I was able to work for a few extra days while they got into my system. May have pushed it a bit too far though, as by lunchtime on one Wednesday I was on the verge of collapse, so I went home and have been off ever since, almost 4 weeks now.
The steroids don't like me very much, and I always react badly to them. I had the usual swelling, end up like the Michelin Man, dizziness, and felt really really unwell. For 3 days I couldn't even sit upright for more than a few minutes, just couldn't hold my own head up without support. Went to the doctors and almost passed out in the waiting room, surprising how quickly the doc can see you when they fear you may make a mess on their floor! hehehe So I spent the majority of about 5 days in bed, for the most part sleeping. Then as the light began to appear at the end of the tunnel, and I was able to sit upright again, it was time for my monthly visit to the Day Unit for my Tysabri.
This was an eventful day to say the least, luckily my usual tysabri buddy was there to keep my spirits up, and the staff are lovely too. They did the first test of the day, and the dipstick showed my glucose levels were off the scale, but we put it down to the recent steroids throwing things out so the support worker did a BM and nearly fell off her chair when it showed 23.8. The doctor asked if I'd forgotten my insulin that morning, and how much jam I'd had on my toast, the entire pot! They asked if I'm a known diabetic, so I told them I'm actually known for not being diabetic, and so it began.
There were blood tests, more BM's and the dreaded Arterial Blood Gases. In a previous job in the emergency admissions unit I'd seen many ABG's done, and had an idea of how painful it was going to be, and boy was I not disappointed. The doctor doing it said it might be a bit sore, I'm going to show her the difference between a bit sore and ABG's if I ever see her again. Her first go missed, so she spent about 2-3 minutes digging around in my wrist for nothing. Her second go was looking like it was heading the same way, until after several minutes of digging she found what she was looking for and got the blood. I was very well behaved throughout, only cried a little bit and only swore in my head (a very lot), but it was one of the most painful things ever. Nest time they say ABG I'll be the one thats just left the building! When she finished the doc even had the cheek to say she was sweating, I told her she should be sat where I was!
She then came back to add insult to injury (there was injury I had massive black bruising) and said they would be admitting me to hospital. I pointed out that this would not be necessary and eventually she came round to my way of thinking, after much begging. The upshot was, after being seen by the diabetic registrar, that the steroids have done something to me and I am now diabetic. So keeping everything crossed that it can be controlled by tablets.
Hows that for service though, good old NHS! You go for one thing and they send you home the same day with diabetes to add to your repertoire!
Well this went in a totally different direction from the one I had in mind when I started - go figure. So thats enough of my woes for now. Hope you are having a good Sunday, or whatever other day it may be when you read this!
Take care
C x
Thursday, 10 March 2011
Flowers from my friends
I've just been lucky enough to recieve a delivery from a flower company. Contained in the box was flowers and a teddy bear, and the card told me they were from my colleagues at work. If you have read my very first post you will know that I count myself lucky to be able to call my workmates friends, and this is just one thing that shows why.
So I thought I'd tell you a bit more about why I think this. For the last 5 years I have have worked with the best bunch of people anyone could wish for. I worked for the NHS in learning disabilities services, working in residential services. After a fairly extended period of sickness following the operation on my neck I returned to work to be part of a project team that had been set up. Due to the op and the MS I was no longer up to working in the hands on role I had been doing. Over the next 6 months more people joined the team and by the spring of 2007 our little group was complete. We always knew the project was time limited due the the way it was funded, but managed again and again to secure more funding to allow it to continue.
As a team we were based alongside the local social services department, and worked very closely with one of the teams there. As we worked more and more closely together we became friends as well as colleagues. In this time I have had several MS relapses, some worse then others, and had a stay in hospital. Throughout all of these trying times the guys have been there, supporting me, helping me get through. I know I would not have managed to continue so easily at work without the support I've had from them all. For this I will always be grateful to them all.
When we secured the last lot of funding for the team, we knew then it would be the last we would get, and that our ride would come to an end in March this year. Because of the approaching end date some of the team had to start thinking what they would do when it came to an end, me included. Fate intervened and a job came up in the team we had worked so closely with for the last few years. I applied, and was lucky enough to get the job, despite being like a rabbit caught in the headlights throughout the entire interview. When they asked if I had any questions I said yes, could I leave now.
So in April 2010 I left my comfort zone and started my new job. The team there are fab too, I was already friends with them, and working with them has just strenthened this, and in some cases made friendships much closer. Just before I started another lady started with the team also, and fate certainly intervened there too. She fitted in so well, its just like she's been part of the team all along, and I'm lucky to be able to call her a friend now.
Both teams fit together as one. We have nights out, and get drunk together. Usually curry nights, due to the boss refusing to eat anything else, or sulking if he's made to. We take the mickey out of each other. We have a good old gossip, we share our joys and our sorrows, our highs and our lows. There is always someone there to support you when you need it, and we've all got each others backs. We disagree occasionally, but its always over as quickly as it began, and never any grudges held.
They say you can choose your friends not your family, but in fact all things considered thats what we are like, a family. But this one you would choose!
C x
So I thought I'd tell you a bit more about why I think this. For the last 5 years I have have worked with the best bunch of people anyone could wish for. I worked for the NHS in learning disabilities services, working in residential services. After a fairly extended period of sickness following the operation on my neck I returned to work to be part of a project team that had been set up. Due to the op and the MS I was no longer up to working in the hands on role I had been doing. Over the next 6 months more people joined the team and by the spring of 2007 our little group was complete. We always knew the project was time limited due the the way it was funded, but managed again and again to secure more funding to allow it to continue.
As a team we were based alongside the local social services department, and worked very closely with one of the teams there. As we worked more and more closely together we became friends as well as colleagues. In this time I have had several MS relapses, some worse then others, and had a stay in hospital. Throughout all of these trying times the guys have been there, supporting me, helping me get through. I know I would not have managed to continue so easily at work without the support I've had from them all. For this I will always be grateful to them all.
When we secured the last lot of funding for the team, we knew then it would be the last we would get, and that our ride would come to an end in March this year. Because of the approaching end date some of the team had to start thinking what they would do when it came to an end, me included. Fate intervened and a job came up in the team we had worked so closely with for the last few years. I applied, and was lucky enough to get the job, despite being like a rabbit caught in the headlights throughout the entire interview. When they asked if I had any questions I said yes, could I leave now.
So in April 2010 I left my comfort zone and started my new job. The team there are fab too, I was already friends with them, and working with them has just strenthened this, and in some cases made friendships much closer. Just before I started another lady started with the team also, and fate certainly intervened there too. She fitted in so well, its just like she's been part of the team all along, and I'm lucky to be able to call her a friend now.
Both teams fit together as one. We have nights out, and get drunk together. Usually curry nights, due to the boss refusing to eat anything else, or sulking if he's made to. We take the mickey out of each other. We have a good old gossip, we share our joys and our sorrows, our highs and our lows. There is always someone there to support you when you need it, and we've all got each others backs. We disagree occasionally, but its always over as quickly as it began, and never any grudges held.
They say you can choose your friends not your family, but in fact all things considered thats what we are like, a family. But this one you would choose!
C x
Wednesday, 9 March 2011
Fatigue Score for non spoonies
I recently read a very good take on the pain score, describing what each number actually feels like. It got me thinking about the fatigue score too. Everyone who lives with a chronic illness which has associated fatigue will probably be familiar with being asked to score their fatigue out of 10. 10 being the worst, and 1 being no fatigue at all. I thought it might help people that have never experienced it to try and explain, from a non spoonie point of view, what it feels like.
If you aren't familiar with the "spoonie" term, theres a fab description of how fatigue feels, called The Spoon Theory which can be found on a website called But You Don't Look Sick. Have a look. In broad terms a spooonie is someone who suffers from chronic fatigue, and a non spoonie, well everyone else. All of you lucky enough never to have experienced the spirit sapping feeling, like swimming through treacle, of fatigue.
So the list below is my attempt to describe how each number might feel to a non spoonie.
Thankfully these days I've learned to recognise the signs and know my limits, well most of the time, so I don't hit 10 as often. But it still happens, and sometimes the MS has its own ideas and accelerates me straight to 10 for no particular reason.
So if you know someone with a chronic illness who suffers from fatigue, just remember you can't see any of the above happening. When I start to hit the higher numbers I get really rosy cheeks, and someone will always tell me how well I'm looking, when I'm feeling at my worst, so far I haven't thumped anyone, mainly due to not having the energy! Please remember fatigue is an invisible illness, and resist the urge to tell someone they don't look sick!
If you aren't familiar with the "spoonie" term, theres a fab description of how fatigue feels, called The Spoon Theory which can be found on a website called But You Don't Look Sick. Have a look. In broad terms a spooonie is someone who suffers from chronic fatigue, and a non spoonie, well everyone else. All of you lucky enough never to have experienced the spirit sapping feeling, like swimming through treacle, of fatigue.
So the list below is my attempt to describe how each number might feel to a non spoonie.
- You hop out of bed feeling refreshed after a good nights sleep ready to face the world.
- You've had a rotten nights sleep, and get up feeling really groggy and wanting to go back straight back to bed.
- That feeling you get mid afternoon, after a busy morning and a big lunch, when you feel like you just can't do any more and want to put your head on your desk and have a nap.
- How you feel after a busy day at work, when you get home and don't feel like doing anything but putting your feet up, you're shattered!
- You cycle the 8 miles to work, do a full day, miss lunch because you are so busy and cycle home again in the rain. By the time you get to the front door you just don't know if you have the energy to climb the stairs to get into the hot bath you crave.
- Your legs start to feel heavy and every step you take is an effort, you start to feel pain all over, every movement hurts. You feel like you could just fall asleep where you are.
- Walking feels like swimming through treacle. The pain is now starting to take over, Even sitting still hurts all over. Its like that feeling you get when you have influenza, proper flu, not a heavy cold. You hurt all over and just need to sleep.
- Putting one foot in front of the other feels like too much effort to be able to manage. The pain starts to take over your thoughts and you struggle to focus on anything else. You just want to get home to bed, while you can still make it rhough the front door, trouble is you can't make it up the stairs on your own now.
- Getting out of bed takes Hurculean effort, you can't even manage to brush your teeth, can't stand up for long enough. Your head is too heavy to be able to hold it up on your own for more than a few minutes. You'd read a book, but you can't make your eyes focus for long enough.
- Your body has completely shut down, your legs just won't do what your brain tells them to. You hurt all over and the pain is immense. The one thing you need more than anything else is sleep, but the pain, stiffness and other stuff make it impossible to get comfortable enough to get any sleep. You feel like it will never end.
Thankfully these days I've learned to recognise the signs and know my limits, well most of the time, so I don't hit 10 as often. But it still happens, and sometimes the MS has its own ideas and accelerates me straight to 10 for no particular reason.
So if you know someone with a chronic illness who suffers from fatigue, just remember you can't see any of the above happening. When I start to hit the higher numbers I get really rosy cheeks, and someone will always tell me how well I'm looking, when I'm feeling at my worst, so far I haven't thumped anyone, mainly due to not having the energy! Please remember fatigue is an invisible illness, and resist the urge to tell someone they don't look sick!
Tuesday, 8 March 2011
My Daffodil
I've just seen the Marie Curie advert on the TV, so thought I'd share with you who my daffodil is for.
The daffodil is quite special to me anyway, as not only is it the emblem of the Marie Curie campaign, but also the flower of Wales. Although I am not actually Welsh, I am of Welsh decendency, and my family is predominantly Welsh. One of my cousins also once granted me Honorary Welsh status (Cheers Jonj!).
As a family, we also now have cause to be extremely grateful to Marie Curie, and the amazing nurses at the Penarth Hospice (in Wales) for the care and support they recently gave to my cousin H and his family.
Which brings me to who my daffodil is for. My cousin H is almost exactly a year younger than me (363 days to be precise), and when we were children I spent most of my summers in Wales, and most of these with Hywel and his sister S. I became close to both of them, and love them both to pieces. However as we got older, inevitably, we lost touch. I stopped spending my summers in Wales once I started to work, and things drifted.
I'm happy to say though, that largely thanks to Facebook, I was back in touch with H over the last couple of years. I know some people condemn social network sites, and blame them for many of societies evils. However for this one thing alone I will always be grateful to Facebook! Anyway I digress.
H was a very fit and healthy young man up until around June last year (2010), he ran marathons and climbed mountains for kicks. He ran the London Marathon in April last year, and less than a year later he was gone. He leaves behind a 13 year old son, who is the absolute image of his father. As long as B is on this earth you will never be gone Hywel! With his long term partner D, he had even climbed to Mount Everest Base Camp.
In June H's health started to deteriorate, and eventually at the end of September he was given the news that he had cancer of the oesophageous, which had spead to his liver and lungs. This was when he first visited the Marie Curie hospice. The care he recieved was fantastic, but more importantly he felt safe there. They helped with his weight loss and his medication, so he was ready to start his chemo. At first he reponded well to the chemo, and started to improve. Unfortunately he developed a couple of infections, which threw out his chemo schedule, and he deteriorated frighteningly quickly.
H and his long term partner D married just before Christmas, and a few days later he went back to the hospice. He went home briefly on Christmas Day, but this was the last time he was at home. He had shared with his nearest and dearest that when the time came he wanted it to be at the Marie Curie hospice, and he got his wish, when he passed away on January 14th.
H was an inspirational and brave man! He had planned and paid for his own funeral. It was such a fitting tribute to him, and celebration of his life. During his life he had raised money for both Alzheimers and make a Wish, and I'm sure if he had beaten this his next marathon would have been for Marie Curie! In the end H had so little time, and was not able to do so many of the things on his wish list.
Thanks to the one of the nurses at the hospice, and a gentleman called Richard Parks doing the 737 Challenge, H is now going to a place he always dreamed of going. Some of his ashes are being scattered at the top of one of the worlds highest mountains. So he will spend the rest of eternity on top of the world. There is no more fitting place for such a top bloke!
I'm wearing my daffodil for
Hywel Jenkins 1972 - 2011 Free to explore!
The daffodil is quite special to me anyway, as not only is it the emblem of the Marie Curie campaign, but also the flower of Wales. Although I am not actually Welsh, I am of Welsh decendency, and my family is predominantly Welsh. One of my cousins also once granted me Honorary Welsh status (Cheers Jonj!).
As a family, we also now have cause to be extremely grateful to Marie Curie, and the amazing nurses at the Penarth Hospice (in Wales) for the care and support they recently gave to my cousin H and his family.
Which brings me to who my daffodil is for. My cousin H is almost exactly a year younger than me (363 days to be precise), and when we were children I spent most of my summers in Wales, and most of these with Hywel and his sister S. I became close to both of them, and love them both to pieces. However as we got older, inevitably, we lost touch. I stopped spending my summers in Wales once I started to work, and things drifted.
I'm happy to say though, that largely thanks to Facebook, I was back in touch with H over the last couple of years. I know some people condemn social network sites, and blame them for many of societies evils. However for this one thing alone I will always be grateful to Facebook! Anyway I digress.
H was a very fit and healthy young man up until around June last year (2010), he ran marathons and climbed mountains for kicks. He ran the London Marathon in April last year, and less than a year later he was gone. He leaves behind a 13 year old son, who is the absolute image of his father. As long as B is on this earth you will never be gone Hywel! With his long term partner D, he had even climbed to Mount Everest Base Camp.
In June H's health started to deteriorate, and eventually at the end of September he was given the news that he had cancer of the oesophageous, which had spead to his liver and lungs. This was when he first visited the Marie Curie hospice. The care he recieved was fantastic, but more importantly he felt safe there. They helped with his weight loss and his medication, so he was ready to start his chemo. At first he reponded well to the chemo, and started to improve. Unfortunately he developed a couple of infections, which threw out his chemo schedule, and he deteriorated frighteningly quickly.
H and his long term partner D married just before Christmas, and a few days later he went back to the hospice. He went home briefly on Christmas Day, but this was the last time he was at home. He had shared with his nearest and dearest that when the time came he wanted it to be at the Marie Curie hospice, and he got his wish, when he passed away on January 14th.
H was an inspirational and brave man! He had planned and paid for his own funeral. It was such a fitting tribute to him, and celebration of his life. During his life he had raised money for both Alzheimers and make a Wish, and I'm sure if he had beaten this his next marathon would have been for Marie Curie! In the end H had so little time, and was not able to do so many of the things on his wish list.
Thanks to the one of the nurses at the hospice, and a gentleman called Richard Parks doing the 737 Challenge, H is now going to a place he always dreamed of going. Some of his ashes are being scattered at the top of one of the worlds highest mountains. So he will spend the rest of eternity on top of the world. There is no more fitting place for such a top bloke!
I'm wearing my daffodil for
Hywel Jenkins 1972 - 2011 Free to explore!
Saturday, 5 March 2011
Blogging for my Nan!
When I was writing my first blog I thought about how I could self censor. I came to the conclusion that it would be very difficult. It might be a good idea to save a draft of all posts, and come back and re-read them the next day before posting. That way I can avoid posting during a really low moment and regretting it later. I also decided that it may be a good idea to ask someone else to read the blog, and see what they they think. So I asked a very trusted friend to have a read and make sure my ramblings were not too self indulgent or ranting etc. So thank you, to my editorial consultant! Any complaints, please forward them to her.....hehehe
She also told me that she had started a blog herself, but had not written it for ages. This got me to thinking about blogs, the modern day diaries. When you start one, full of enthusiasm, you write lots and often, but as the enthusiasm wears off and life carries on around you, entries get fewer and farther between. Unless of course you are very disciplined, and one of the rare breed that is meticulous about completing a diary every day. I'm sad to say I've never managed it. So back to the blog, as an enthusiastic newbie, there will probably be lots and lots of posts, but I really will try to post regularly, even when the novelty wears off. Honest.....
My Fabulous Nan was a diary writer. For many years she wrote her diary every night, last thing before going to bed. Every Christmas she had to have an A4 page a day diary. Not because she had a lot to say for herself, but because her writing was untidy, and not legible if she wrote small. A trait I fear I may have inherited! Unfortunately she stopped writing the diary when she had a stroke, which affected the hand she wrote with. Now I think that is such a shame, as the diaries she would have written after the stroke would probably have been so enlightening. How she was feeling, how she coped and how she saw the world from a new perspective. I don't know what became of any of her diaries, but I really wish I could read them. But I wish even more that I could read the ones she didn't write!
In some small way, that gives me encouragement to keep up this blogging business. To make her proud, and so one day my daughter my be able to read about what happened to me, how I coped, how I was feeling and how I viewed the world! If she wants to that is.
C x x x
She also told me that she had started a blog herself, but had not written it for ages. This got me to thinking about blogs, the modern day diaries. When you start one, full of enthusiasm, you write lots and often, but as the enthusiasm wears off and life carries on around you, entries get fewer and farther between. Unless of course you are very disciplined, and one of the rare breed that is meticulous about completing a diary every day. I'm sad to say I've never managed it. So back to the blog, as an enthusiastic newbie, there will probably be lots and lots of posts, but I really will try to post regularly, even when the novelty wears off. Honest.....
My Fabulous Nan was a diary writer. For many years she wrote her diary every night, last thing before going to bed. Every Christmas she had to have an A4 page a day diary. Not because she had a lot to say for herself, but because her writing was untidy, and not legible if she wrote small. A trait I fear I may have inherited! Unfortunately she stopped writing the diary when she had a stroke, which affected the hand she wrote with. Now I think that is such a shame, as the diaries she would have written after the stroke would probably have been so enlightening. How she was feeling, how she coped and how she saw the world from a new perspective. I don't know what became of any of her diaries, but I really wish I could read them. But I wish even more that I could read the ones she didn't write!
In some small way, that gives me encouragement to keep up this blogging business. To make her proud, and so one day my daughter my be able to read about what happened to me, how I coped, how I was feeling and how I viewed the world! If she wants to that is.
C x x x
First Timer.......Where do I start?
Well as the title would suggest, I'm new to all this blogging stuff, so don't really know what I should do, and more importantly what I shouldn't. So any tips gratefully recieved!
I am a married Mum of one beautiful teenage daughter. In my blogs I shall refer to them as Hubbs and CC to avoid identifying and causing them any embarrasment. Although CC would probably say I am a constant source of embarrassment, as most mothers of teenagers would relate to. I'm sure you will find out lots more about them as this blog progresses.
I work in Local government, so the least said about that the better probably. I shall avoid saying too much about work, to avoid getting myself into any hot water. I should also stress that any views and opinions expressed are entirely my own, and in no way relate to my employer. Think they call that the disclaimer. I may talk about work, but it will be mainly about the wonderful people I am lucky enough to work with. I know, cheesy again, but happily all true! I'm lucky to be able to say that they are not just colleagues, but friends.
My decision to start blogging was a spur of the moment one really. I figured it would give me something to look back on. A way of seeing what has happened in my life, and how I dealt with it. As these things fade with time, I thought I could use it as an aide memoire type thingie. Especially with MS brain, things fade quicker than they used too! Or it could just be my age......haha
Which brings me neatly to the next bit. As you will probably have noticed in the little "about me" bit, I have Multiple Sclerosis. I was formally diagnosed in 2005, but my first 'big' symptoms were in 2004. When I say big, I ended up in hospital with no feeling from the chest down, so I think that was a fairly big symptom. At the time I was diagnosed with Transverse Myelitis, which is relatively unusual, and told it was unlikely to happen again. When I was back in hospital having my second lot of steroids just a couple of months later after losing the feeling in my hands and arms I started to adjust to the realisation it may in fact be something else, like MS. So when the diagnosis came less than a year later, and the other side of another relapse and yet more steroids, it was no surprise, in fact by then I think it was a relief to at least have a name for it!
That all makes it sound like a simple process, there were of course all of the obligatory stuff that all MS'ers are so familiar with. There were several MRI scans, my brain, my spine, my C-spine, more than once. There was the dreaded Lumbar Puncture, and all the other tests we endure. Oh and in the middle of all this they discovered a quite badly prolapsed disc in my neck at C5/C6, so there was the small matter of surgery to correct it, but thats a whole other story.
I think its important to say that I am more than just my MS! I'm a person first, who just happens to live with this condition, like many others. I have met so many people with MS along the way. Some of them amazing and inspirational, some of them just ordinary people living their lives as best they can like me, and far too many who have become their MS. They have allowed it to define their lives, and in doing so have surrendered their lives to it. They both frustrate and sadden me in equal measure. Many give up work the moment they get the diagnosis, not based on whether they can or cannot do the job, just based on the fact that they have MS now and are "disabled", so they cannot possibly work. Such a shame in a day and age where there is so much that can be done to support people to work for as long as they want to and can.
Please don't get me wrong, I don't condemn anyone who has to give up work because they are not able. Unfortunately I have seen a number who take it as the easy option, and that saddens me. They miss out on so much. Don't get me wrong, every day at work is a struggle, some more than others, some less. But I gain so much from it, and not just the pay cheque at the end of the month. But thats for another time too.
Well I think that is probably it for the first go. Just wanted to give anyone who strays across this a little background into who I am. I can't promise not to rant from time to time (as you'll already have noticed) but I will try to keep it to a mild rant. What can I say I'm passionate about stuff. But as a very good friend of mine used to say about my rants "They can be painful, but they are over quickly!" Thanks Rosie! Miss you!
So I shall bid you farewell, until the next time!
C x
I am a married Mum of one beautiful teenage daughter. In my blogs I shall refer to them as Hubbs and CC to avoid identifying and causing them any embarrasment. Although CC would probably say I am a constant source of embarrassment, as most mothers of teenagers would relate to. I'm sure you will find out lots more about them as this blog progresses.
I work in Local government, so the least said about that the better probably. I shall avoid saying too much about work, to avoid getting myself into any hot water. I should also stress that any views and opinions expressed are entirely my own, and in no way relate to my employer. Think they call that the disclaimer. I may talk about work, but it will be mainly about the wonderful people I am lucky enough to work with. I know, cheesy again, but happily all true! I'm lucky to be able to say that they are not just colleagues, but friends.
My decision to start blogging was a spur of the moment one really. I figured it would give me something to look back on. A way of seeing what has happened in my life, and how I dealt with it. As these things fade with time, I thought I could use it as an aide memoire type thingie. Especially with MS brain, things fade quicker than they used too! Or it could just be my age......haha
Which brings me neatly to the next bit. As you will probably have noticed in the little "about me" bit, I have Multiple Sclerosis. I was formally diagnosed in 2005, but my first 'big' symptoms were in 2004. When I say big, I ended up in hospital with no feeling from the chest down, so I think that was a fairly big symptom. At the time I was diagnosed with Transverse Myelitis, which is relatively unusual, and told it was unlikely to happen again. When I was back in hospital having my second lot of steroids just a couple of months later after losing the feeling in my hands and arms I started to adjust to the realisation it may in fact be something else, like MS. So when the diagnosis came less than a year later, and the other side of another relapse and yet more steroids, it was no surprise, in fact by then I think it was a relief to at least have a name for it!
That all makes it sound like a simple process, there were of course all of the obligatory stuff that all MS'ers are so familiar with. There were several MRI scans, my brain, my spine, my C-spine, more than once. There was the dreaded Lumbar Puncture, and all the other tests we endure. Oh and in the middle of all this they discovered a quite badly prolapsed disc in my neck at C5/C6, so there was the small matter of surgery to correct it, but thats a whole other story.
I think its important to say that I am more than just my MS! I'm a person first, who just happens to live with this condition, like many others. I have met so many people with MS along the way. Some of them amazing and inspirational, some of them just ordinary people living their lives as best they can like me, and far too many who have become their MS. They have allowed it to define their lives, and in doing so have surrendered their lives to it. They both frustrate and sadden me in equal measure. Many give up work the moment they get the diagnosis, not based on whether they can or cannot do the job, just based on the fact that they have MS now and are "disabled", so they cannot possibly work. Such a shame in a day and age where there is so much that can be done to support people to work for as long as they want to and can.
Please don't get me wrong, I don't condemn anyone who has to give up work because they are not able. Unfortunately I have seen a number who take it as the easy option, and that saddens me. They miss out on so much. Don't get me wrong, every day at work is a struggle, some more than others, some less. But I gain so much from it, and not just the pay cheque at the end of the month. But thats for another time too.
Well I think that is probably it for the first go. Just wanted to give anyone who strays across this a little background into who I am. I can't promise not to rant from time to time (as you'll already have noticed) but I will try to keep it to a mild rant. What can I say I'm passionate about stuff. But as a very good friend of mine used to say about my rants "They can be painful, but they are over quickly!" Thanks Rosie! Miss you!
So I shall bid you farewell, until the next time!
C x
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