Tis the season to be jolly ow ow ow ow owww ow ow ow owwwww
Another busy day after a busy week.
I had a great appointment with the occupational therapist from social services today who assessed me for a stair lift grant. The woman was absolutely wonderful but it was exhausting. I had to tell my whole story and I had to be honest, it is so much easier to put on a brave face!! Being honest when you're in as much pain as I am is exhausting! The superb news is though is that she has assessed that I have a 'critical need' and will be writing in her report that she thinks I need the stair lift.
After the meeting I had to make some mince pies to put in the hampers I do for my family. As I finished and was packing away my entire tub of flour fell out the cupboard. That's 2kg of flour all over my kitchen floor. It didn't just tip in a pile, oh no, it spread across the flour and what did I do? In my sheer frustration and screaming pain I threw the other one and that also tipped out. Well done Clo, great decision! (It's cringe worthy to openly admit such a thing but this is all about an honest account of life with a chronic illness so there you have it!)
So now, there was about 4kg of flour and 2kg of oats all over my kitchen floor! The oats fell out the cupboard just for good measure. I don't get cross very often, it's one of the things I am working on. Allowing myself to be angry about my illness. I am afraid of my own anger and I don't let myself connect to it so the throwing of the flour tub was a bit of a revelation for me! A really messy revelation but one none the less.
I don't know why I am afraid of allowing myself to get angry, I think maybe I see it as a very negative emotion and I am very much a glass half full kind of girl (amazingly!) I don't know, I just find it very difficult.
Anyway, I am working on allowing myself to feel angry and accept it's ok to feel like having this illness is not fair and that that doesn't make me a bad person nor does it mean I'm giving in or being a victim. It's just acknowledging that those emotions are natural and manageable.
I allowed myself a jolly good cry as I cleared it up and put myself to bed. My daughter and husband were out so I decided to take full advantage of a quiet house. This is huge step for me. All week I have felt so much (self induced) pressure to keep all the balls in the air so my husband can just concentrate on getting well, he's been really suffering with his arm injury. It's the first time he's had any sort of injury and I think he is genuinely quite shocked at just how much it hurts and how useless that is making him feel.
Anyone with Hypermobility Syndrome will know how dangerous it is for the body not to rest and today I gave in and collapsed into my bed at 6pm.
I love Christmas time, I love the entire advent season but it is one of the hardest times of year to feel so unwell. I have a deep desire to create every pin I have repinned for the past 12 months and yet my body holds no punches in punishing me for such reckless behaviour!
I have put myself under no pressure to 'over achieve' and to only do what I can but that doesn't take away the sense of loss that I can't do all the things I want to do. There is such an idea of perfection around Christmas and that makes it very tough if you're sick, grieving, out of work etc.
Fatigue is also beeatch this time of year, it's like someone is constantly on your back trying to pull you down and all you want to do is muster up the strength to stay up right!
I am pleased that I made the promise to myself at the beginning of advent not to strive for perfection this year but it's funny how just the extra things I am doing have driven home for me quite how dramatically my life has changed since I became disabled.
That's all I have in me tonight. It's now 10pm and just this short blog has taken me hours because I've had to break from it a few time to get various things done! Mainly washing, detangling and putting up my daughters hair that now reaches beyond her bottom when it's wet! If she tilts her head back it is actually at the back of her knees now!
Sorry this entrance is a rambling one!
Friday 20 December 2013
Tuesday 17 December 2013
Can I help you?
AAAAAAAAGGGGGGGGGGHHHHHHHHHHH.... and breathe!
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Saturday 7 December 2013
Fever!
That's the actual raging temperature rather then the classic song!
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
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