As we are now rapidly approaching Christmas, just a week away as of writing this post, I have decided that this will be the last post of 2018. A year that I will be particularly happy to get rid of for reasons too numerous to mention. I will be giving myself a little break from blogging and will be back on 10th January 2019 which seems a date massively in the distance but in reality is a mere three weeks from the date this blog post is published.
I haven't taken this long of a break for many years but some times we all just need to be in the moment and self-care. I always get incredibly stressed around Christmas, it's not something I massively enjoy as it's built up to be this wonderful, magical thing but I actually find it quite a lonely time. Hubby gets very limited time off work and he's back in the blink of an eye. This may sound a bit baa humbug to some but I am guessing I am not alone in feeling this way about Christmas, as in it promises much and delivers little.
I always get incredibly wound up in the run up to Christmas, I worry things won't be perfect, all the glossy magazines and TV programmes sell the belief that if you aren't making absolutely everything from scratch, food, decorations, wreaths etc then you are an abject failure. In the early years of being sick I would work incredibly hard trying to ensure Christmas was picture perfect. I would make the whole Christmas dinner from scratch, I would be utterly miserable and stressed out by the sheer enormity of the task and most of the time I was only cooking for two. When I am stressed I get snappy so the knock on effect was that hubby and I would spend the whole of the Christmas dinner cooking time sniping at each other and taking offence at every word uttered. It was no fun at all. The food was absolutely delicious but was it worth the sleepless nights ( I kid you not ) and the marital discord, no way.
When in 2016 Christmas was approaching and I was suffering from a CSF leak, the stress was even worse. There was no way I could spend 2 to 3 hours upright in the heat of the kitchen without it destroying the rest of the day. The CSf leak meant being upright induced the most horrific head pain that no pain relief would touch. I came to the conclusion that for once Christmas dinner cooked from scratch could take a running jump. There was no way I was destroying my health for the rest of the day for a meal that would take 20 - 30 minutes to consume. It didn't make any sense to me at all. So hubby bought as much as he could pre-prepared / frozen and we had just the gravy to make along with the carrots and sprouts. Ok it was never going to win a Michelin star but it was passable and when you are chronically sick or in chronic pain that is all you should be aiming for.
Perfection is a word that is bandied around by all of us but in reality perfection doesn't exist and we shouldn't all be wearing ourselves out trying to achieve a marketing concept. If your roast potatoes aren't cooked in duck / goose fat who gives a shit? If your Yorkshire puddings are Aunt Bessie's who cares? Who knows unless you tell them and my neighbours certainly won't be rooting around in my bin trying to discover if I was the perfect hostess or not. The pressure we put upon ourselves to have the perfect Instagrammable Christmas is just silly!
Now the above probably makes me sound like I have my shit together and that I don't get stressed about Christmas. Nothing could be further from the truth. This year I have just found something else to worry about. Believe me if there is something I can find to wind myself up over I will and do. I just don't get stressed about Christmas Dinner - well I might a little bit as I have to work out the timings for everything and supervise Mr Myasthenia Kid in the kitchen whilst falling over two dogs who think any food in the kitchen is fair game and only being cooked for their enjoyment.
This year I have gone down a wildly different route for Christmas presents, as in due to my new-found skills I have made the majority of them for family and friends. Initially I felt very smug about the fact that I could utilise my skills this way and wrote out lists of gift ideas and set about working my way through making them. It has proved stressful and quite difficult at times as I have battled this trapped nerve in my neck. The issue this year has been that due to the fact I have made all the gifts or the majority of them, I have panicked that people will think I am cheap.
I have found since I started that people fall into two categories, category one - handmaid equals cheap, therefore you shouldn't charge a lot of money for any item you make. Basically they want an artisan look for pence rather than the actual cost of producing an item or category two - a basic understanding or full understanding of the price of materials, skills involved and appreciation at the fact you have spent your spare time making them a unique and individual item. It surprises me how many people fall into the first category, when you buy cheap you are exploiting another human being. Maybe that human being lives on the other-side of the world and works for peanuts so that you can have your item at a rock bottom price? If you can live with that, that's fine.
Because this is the first time for me making gifts I don't know what category a lot of my friends and family fall into. I don't know if they will be making snide comments about me being a cheap-skate or if they will like the items I have made. Due to this I have probably over gifted as I don't want them feeling short-changed. In effect instead of spending an online choosing gifts that they may not want or need or maybe thrown away, I have managed to create days of work for myself ensuring everyone feels special due to the gifts I have made them.
So yet again as you see I have managed to find something to worry about. Thankfully it is just worry and not full-blown anxiety. My anxiety levels have dropped considerably from where they have been the rest of the year, this is my normal level of worry. And to be honest if I had bought gifts I would still be worried about what people thought of them and me . So nothing has changed really.
Thank you to everyone that has read my blog posts over the last ten years, can you believe this little blog has been going on and off for all that time? Thank you to my new readers who joined this year and have provided lovely feed back either as comments on my blog or on various social media platforms.
I'd like to wish those of you who celebrate Christmas a Merry Christmas and to everyone else happy holidays, happy Yule etc. Just enjoy the time you get to spend with loved ones be they friends or family.
See you in 2019.
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Thursday 20 December 2018
Thursday 13 December 2018
First Physio
Today, Tuesday 11th December was my first physio session, in 4 years. I had no idea so much time had passed since I had been to physio. I really wish that I had kept up with it, even if I just went twice a year as perhaps I wouldn't be in the mess I am now but life just gets in the way sometimes. Things take priority and then your routine falls by the wayside. Looking at it now I realised that I kept those exercises up for two years until I suffered my spontaneous CSF leak and then it was just too painful to do them.
I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don't get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn't great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn't really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.
The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn't be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.
My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it's going to be very uncomfortable. After months...well you get to the state I am in where everything hurts constantly.
Today's session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied.
My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It's so weird you just feel this probe going over your neck, (sides and back of your neck) and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily.
By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It's not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that's because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).
I turned up to today's appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven't returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven't had a day without constant pins and needles.
My physio says it's going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December.
I am absolutely shattered after today's session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!
I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don't get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn't great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn't really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.
The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn't be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.
My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it's going to be very uncomfortable. After months...well you get to the state I am in where everything hurts constantly.
Today's session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied.
My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It's so weird you just feel this probe going over your neck, (sides and back of your neck) and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily.
By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It's not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that's because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).
I turned up to today's appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven't returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven't had a day without constant pins and needles.
My physio says it's going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December.
I am absolutely shattered after today's session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!
Thursday 6 December 2018
Its that time of year again!
Well what a week, I have been super busy making gifts for family and friends for Christmas, whilst battling the crippling neck pain and yesterday having a stomach upset meaning I was racing faster to the bathroom than Usain Bolt. It wasn't pretty and it wasn't fun. It took a good 12 hours for my tum to stop cramping. Anyway that is enough bathroom talk for the opening paragraph of my blog post.
On top of all of that I have woken up with a very sore finger on my right hand. Its one of my typing finger's so this week is going to be a photo blog , the joint has swollen, I'm pretty sure its my arthritis playing up just for a bit of variety. I haven't shown you any photos for what seems like forever. So here they are.
Last weekend we decided that we would get the Christmas decorations out. It is a little early for us but hubby is out with work this weekend and would have been too delicate to climb the ladder into the loft on Sunday safely. All in all it took 90 minutes which is pretty good going when you think the dresser had to be stripped and cleaned, all the pottery that was coming off wrapped and packed and all the gorgeous Christmas stuff put out.
I've been beavering away making lots of gifts and then I decided why not add to my work load and instead of buying gift bags buy a job lot of plain cotton bags (blanks as they are known by embroidery people! I found that out this week) and thought I would embroider them. That way they wouldn't get thrown away and could used for years rather than one Christmas ( I always try to save gift bags but many of them don't make it through until Christmas having been bashed about whilst being moved trying to find other things.) I bought myself some variegated thread as well, so did quite a few using that.
Sorry the pictures aren't brilliant, these were taken immediately after they were done and needed an iron really. Now they are stuffed with presents. Here are some that I did using "normal" thread and much better photographs
I finally managed to complete Mr Myasthenia Kids advent calendar that I bought in August but had been putting off for months as it had box pleats something I have never done before. To be fair it wasn't too bad. We are still waiting for a dowel to hang it from the lounge door so it's in its temporary location here.
I fell in love with this fabric range from Makower , I have a table runner using this design. On Black Friday I managed to pick up some more fabric in this Christmas range with plans to make some cushion covers. At the time I thought I may get this done before Christmas then as days passed I did start to wonder if I meant next Christmas as there seemed so much to do ( and I kept adding to it). I managed to knock them up today, which I am chuffed about as I had to use my overlocker to finish the seams to stop them fraying so that they will last and last. I made 4, two of each fabric design
I have two Christmas lap quilts that need bound so that they can replace the current quilts on the sofa. I am hoping I will get these done in the next few days. I will be making a scrappy binding using the off cuts from the cushions and table runner and any other Christmas scraps I can get my hands on. I will get these finished before Christmas, even if it kills me! Which I might do.
Tonight I am shattered, I hope that I manage to get some sleep tonight and stop waking up in a blind panic with all the things I need to do - even though I don't work I find this time of year very stressful. There is so much pressure for things to be perfect even though in reality nothing is. I do have a few things I need to make for other people and I can't let them down as it will mess them up for Christmas. I am feeling the pressure.
Next week I start physio, I am really hoping that we can make some difference to my neck issue.
On top of all of that I have woken up with a very sore finger on my right hand. Its one of my typing finger's so this week is going to be a photo blog , the joint has swollen, I'm pretty sure its my arthritis playing up just for a bit of variety. I haven't shown you any photos for what seems like forever. So here they are.
Last weekend we decided that we would get the Christmas decorations out. It is a little early for us but hubby is out with work this weekend and would have been too delicate to climb the ladder into the loft on Sunday safely. All in all it took 90 minutes which is pretty good going when you think the dresser had to be stripped and cleaned, all the pottery that was coming off wrapped and packed and all the gorgeous Christmas stuff put out.
I've been beavering away making lots of gifts and then I decided why not add to my work load and instead of buying gift bags buy a job lot of plain cotton bags (blanks as they are known by embroidery people! I found that out this week) and thought I would embroider them. That way they wouldn't get thrown away and could used for years rather than one Christmas ( I always try to save gift bags but many of them don't make it through until Christmas having been bashed about whilst being moved trying to find other things.) I bought myself some variegated thread as well, so did quite a few using that.
Sorry the pictures aren't brilliant, these were taken immediately after they were done and needed an iron really. Now they are stuffed with presents. Here are some that I did using "normal" thread and much better photographs
I finally managed to complete Mr Myasthenia Kids advent calendar that I bought in August but had been putting off for months as it had box pleats something I have never done before. To be fair it wasn't too bad. We are still waiting for a dowel to hang it from the lounge door so it's in its temporary location here.
I fell in love with this fabric range from Makower , I have a table runner using this design. On Black Friday I managed to pick up some more fabric in this Christmas range with plans to make some cushion covers. At the time I thought I may get this done before Christmas then as days passed I did start to wonder if I meant next Christmas as there seemed so much to do ( and I kept adding to it). I managed to knock them up today, which I am chuffed about as I had to use my overlocker to finish the seams to stop them fraying so that they will last and last. I made 4, two of each fabric design
I have two Christmas lap quilts that need bound so that they can replace the current quilts on the sofa. I am hoping I will get these done in the next few days. I will be making a scrappy binding using the off cuts from the cushions and table runner and any other Christmas scraps I can get my hands on. I will get these finished before Christmas, even if it kills me! Which I might do.
Tonight I am shattered, I hope that I manage to get some sleep tonight and stop waking up in a blind panic with all the things I need to do - even though I don't work I find this time of year very stressful. There is so much pressure for things to be perfect even though in reality nothing is. I do have a few things I need to make for other people and I can't let them down as it will mess them up for Christmas. I am feeling the pressure.
Next week I start physio, I am really hoping that we can make some difference to my neck issue.
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