Today is Colour the World Orange day, the international awareness day for CRPS (Complex Regional Pain Syndrome). To try and increase understanding I'm stealing a format (and many of the questions from the invisible illness week "30 Things" meme.
CRPS is a chronic pain condition, there's no known mechanism for it yet but it is usually triggered by an injury. CRPS likely has a number of causes which almost certainly include neurological and autonomic elements. CRPS is characterised by severe pain, swelling, temperature changes, discolouration and motor dysfunction. for more information click here.
1. My CRPS affects: my whole body - it started in my right arm but then spread.
2. I was diagnosed with it in: late April 2007 after an accident at school
3. But I had symptoms since: I had some symptoms start which could have been CRPS in October 2006 - Officially though my CRPS started early April 2007. I only had a 2 - 3 week wait for diagnosis, I know others who had to wait years.
4. The biggest adjustment I’ve had to make is: not doing everything! Pacing and prioritising is hard but if I don't then I end up being able to do very little at all.
5. Most people assume: That my pain is not that high because I'm not visibly distressed by it. My normal daily pain level usually hovers between a 7/10 and an 8/10.
6. The hardest part about mornings are: The moment after I wake up and the pain hits me life a truck. I never get used to that.
7. My favorite medical TV show is: Casualty
8. A gadget I couldn’t live without is: My electric wheelchair - no contest. Closely followed by my inflatable bath lift.
9. The hardest part about nights are: not being able to sleep.
10. Each day I take 30 pills & vitamins plus other medications in liquid form. (No comments, please).
11. Regarding alternative treatments I: am willing to try most things. I have regular acupuncture, the scientific explanation says it works the same way as a TENs machine. Even if it's a placebo I don't care so long as it works.
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career: I can't work or study at the moment. Hopefully I'll be well enough to go back to uni soon.
14. People would be surprised to know: the slightest touch to my body hurts, clothing hurts, hugs hurt, the wind on my skin hurts. You probably don't know because a) I'm not a big fan of going round naked and b) I like hugs.
15. The hardest thing to accept about my new reality has been: that I can't just power through.
16. Something I never thought I could do with my illness that I did was: so many things. Right after diagnosis I would have said writing. Now I say go to uni,
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is: swimming. It takes too much energy.
19. A surprising way CRPS effects me is: the amount of fatigue I have, it's not one of the headline symptoms in most people CRPS but for me it is as disruptive as the pain.
20. A new hobby I have taken up since my diagnosis is: paper crafts.
21. If I could have one day of feeling normal again I would: climb a mountain. Or dig the garden. Something physical anyway.
22. My illness has taught me: a lot about myself. I would never have known how resilient I am without it.
23. Want to know a secret? One thing people say that gets under my skin is: "it can't be that bad". If I'm telling you it's bad it's probably worse than you can imagine. I don't really talk about my normal level of bad.
24. But I love it when people: do little things to cheer me up. Send me a text or come over for tea/coffee.
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Colour The World Orange because: I'm part of an organisation called CRPS UK where we work to help to improve the lives of people with CRPS. Awareness and education is a big part of that.
30. The fact that you read this list makes me feel: happy that you've taken the time to learn.
Showing posts with label RSD. Show all posts
Showing posts with label RSD. Show all posts
Monday, 2 November 2015
Sunday, 12 April 2015
Decisions and priorities.
This week I made a decision. It wasn't a nice, easy, fluffy, reassuring decisions. Although when someone says "I made a decision" very rarely is it an easy decision to make. No, the statement of having made a decision usually means there was careful deliberation, careful thought and it wasn't an easy decision that could be jumped into quickly without much thought.
The sort of decision which require you to say that you have made a decision are never easy.
The decision I made this week was the sort of decision which leaves you feeling raw, like someone has furiously rubbing away at your insides with sandpaper. It was the sort of decision which leaves you exhausted, mentally and physically. The sort of decision which leaves year mind full, your heart heavy and your eyes wet. The sort of decision that leaves you with a hole in your gut, ready to be filled up with something but exactly what you're not sure.
What was the decision? That I can't go on as I am. That I am not willing to further sacrifice my physical and mental health in order to pursue higher education. Why is it such a big issue? Isn't it a fairly logical sensible decision? Maybe but to explain why it was so hard I need to take you back a little way to 2010.
In September 2010 I started a full time photography BTEC level 3 (for people out of the UK this is a vocational qualification considered roughly equivalent to A level exams taken at age 18). When I say full time what I mean is 3 full days per week in college, plus an hour or so travelling each way. I enjoyed it, I was doing well. But by October half term, having done 6 weeks at college, I was completely exhausted. I rested on my weeks holiday and not a lot changed, I was still exhausted and I still wanted to do my course. Being the stubborn person that I am I went back after the holiday, the travel plus the activity required in the course, plus some other big stresses meant that by November my health had completely crashed. I couldn't stand for more than a few seconds, I couldn't get upstairs to bed, pain levels skyrocketed and I couldn't cope with anything except minimal levels of light and sound. I got my first wheelchair. My immune system was shot and that winter I got virus after virus culminating in appendicitis in February and an infection in the surgical wound. The college did all they could to support me but I just wasn't well enough to go back and do the hours I would need to get the work done. I finally dropped out (after a very low attendance rate) in March.
I ignored what my body was telling me and things just got worse and worse. It took me two years to even get close to where I was in the Summer of 2010. It's a pattern that has repeated too, I ignore what my body is doing because I'm prioritising education and my health crashes. I lose function, I get more pain, I'm more anxious, I get more viruses the whole lot. Even if I'm just ignoring it for a short time like an exam period (see hospital stays summer 2011 and summer 2012). I'm not willing to go back there again if I can avoid it.
Right now I see a lot of the same patterns and symptoms occurring as happened in 2010. I'm gradually getting more and more exhausted; I'm having trouble with light, noise and people; I'm putting a load of pressure on myself; I'm falling behind in work; I'm losing some physical function; I'm getting really anxious and I'm putting education before my health. It is not okay for this to carry on and something has to change.
The problem is that when I'm at uni I need to do three sets of things. 1) Daily living tasks, which includes directing carers; it is a lot harder to do this at uni than it is to do it at home. 2) Academic work: reading, writing essays, attending lectures and tutorials etc. And 3) Do enough Social Stuff to keep anxiety and depression to a minimum. But I can't do all of them, it just hasn't worked - using every scrap of energy I've got I can maybe do half of what I need to do in each task (or one really well, half of another and none of the other one). I've had lots of support from all sorts of people and I've kept trudging onward, doing pretty well academically but not really looking after myself. This takes it's toll, when I don't look after myself I get more exhausted and more anxious so I can't think clearly and have difficulty attending lectures. I put all my energy into doing the academic work and I end up not being able to do the academic work. It's been a hard decision to make because I love uni and love what I get to do when I'm there and I know that prioritising my health will mean all of that is going to change.
Exactly what the outcome of this decision will be I'm not sure, I need to speak to my university support team to see what they can do to help me. At the moment it looks like the best case scenario is that I sit my exams later in the summer, stay mostly at my parents home and finish my first year just a little later than everyone else. I have no idea how possible this will be, whether it's logistically possible or whether I will have the energy to put in the work that I need to.
There are a whole host of other options too and the disability team may have ideas I've not even thought about.
So I don't really know what will happen. Right now I'm finding things to soothe my soul, to relax my body and unwrap my mind from the panic that has been buzzing about for some time. Having made the decision that I'm going to proritise my health and my enjoyment of life has freed me a little. I feel freer to breathe and freer to do what I both want and am able to do. I still feel raw and a little churned up inside but it feels better than before. And it feels an awful lot better than the prospect of carrying on as I was, of keeping bullheadedly ploughing on doing what I am "supposed" to be doing. It feels so much better than the prospect of crashing so hard I end up in hospital again or in a state where I'm not able to do any of the things I love.
It's not easy, it goes against my instincts, but it is much better this way.
The sort of decision which require you to say that you have made a decision are never easy.
The decision I made this week was the sort of decision which leaves you feeling raw, like someone has furiously rubbing away at your insides with sandpaper. It was the sort of decision which leaves you exhausted, mentally and physically. The sort of decision which leaves year mind full, your heart heavy and your eyes wet. The sort of decision that leaves you with a hole in your gut, ready to be filled up with something but exactly what you're not sure.
What was the decision? That I can't go on as I am. That I am not willing to further sacrifice my physical and mental health in order to pursue higher education. Why is it such a big issue? Isn't it a fairly logical sensible decision? Maybe but to explain why it was so hard I need to take you back a little way to 2010.
In September 2010 I started a full time photography BTEC level 3 (for people out of the UK this is a vocational qualification considered roughly equivalent to A level exams taken at age 18). When I say full time what I mean is 3 full days per week in college, plus an hour or so travelling each way. I enjoyed it, I was doing well. But by October half term, having done 6 weeks at college, I was completely exhausted. I rested on my weeks holiday and not a lot changed, I was still exhausted and I still wanted to do my course. Being the stubborn person that I am I went back after the holiday, the travel plus the activity required in the course, plus some other big stresses meant that by November my health had completely crashed. I couldn't stand for more than a few seconds, I couldn't get upstairs to bed, pain levels skyrocketed and I couldn't cope with anything except minimal levels of light and sound. I got my first wheelchair. My immune system was shot and that winter I got virus after virus culminating in appendicitis in February and an infection in the surgical wound. The college did all they could to support me but I just wasn't well enough to go back and do the hours I would need to get the work done. I finally dropped out (after a very low attendance rate) in March.
I ignored what my body was telling me and things just got worse and worse. It took me two years to even get close to where I was in the Summer of 2010. It's a pattern that has repeated too, I ignore what my body is doing because I'm prioritising education and my health crashes. I lose function, I get more pain, I'm more anxious, I get more viruses the whole lot. Even if I'm just ignoring it for a short time like an exam period (see hospital stays summer 2011 and summer 2012). I'm not willing to go back there again if I can avoid it.
Right now I see a lot of the same patterns and symptoms occurring as happened in 2010. I'm gradually getting more and more exhausted; I'm having trouble with light, noise and people; I'm putting a load of pressure on myself; I'm falling behind in work; I'm losing some physical function; I'm getting really anxious and I'm putting education before my health. It is not okay for this to carry on and something has to change.
The problem is that when I'm at uni I need to do three sets of things. 1) Daily living tasks, which includes directing carers; it is a lot harder to do this at uni than it is to do it at home. 2) Academic work: reading, writing essays, attending lectures and tutorials etc. And 3) Do enough Social Stuff to keep anxiety and depression to a minimum. But I can't do all of them, it just hasn't worked - using every scrap of energy I've got I can maybe do half of what I need to do in each task (or one really well, half of another and none of the other one). I've had lots of support from all sorts of people and I've kept trudging onward, doing pretty well academically but not really looking after myself. This takes it's toll, when I don't look after myself I get more exhausted and more anxious so I can't think clearly and have difficulty attending lectures. I put all my energy into doing the academic work and I end up not being able to do the academic work. It's been a hard decision to make because I love uni and love what I get to do when I'm there and I know that prioritising my health will mean all of that is going to change.
Exactly what the outcome of this decision will be I'm not sure, I need to speak to my university support team to see what they can do to help me. At the moment it looks like the best case scenario is that I sit my exams later in the summer, stay mostly at my parents home and finish my first year just a little later than everyone else. I have no idea how possible this will be, whether it's logistically possible or whether I will have the energy to put in the work that I need to.
There are a whole host of other options too and the disability team may have ideas I've not even thought about.
So I don't really know what will happen. Right now I'm finding things to soothe my soul, to relax my body and unwrap my mind from the panic that has been buzzing about for some time. Having made the decision that I'm going to proritise my health and my enjoyment of life has freed me a little. I feel freer to breathe and freer to do what I both want and am able to do. I still feel raw and a little churned up inside but it feels better than before. And it feels an awful lot better than the prospect of carrying on as I was, of keeping bullheadedly ploughing on doing what I am "supposed" to be doing. It feels so much better than the prospect of crashing so hard I end up in hospital again or in a state where I'm not able to do any of the things I love.
It's not easy, it goes against my instincts, but it is much better this way.
Sunday, 31 August 2014
10 things you need to know about getting to uni as a disabled student.
This is not about getting in to university but actually getting there, jumping through the hoops and processes so university is actually possible once you've got in.
Where I use the words Disabled or Disability I mean anything that qualifies as a disability under the equality act having a "substantial" and "long-term" negative effect on a person's abilities. This includes both physical and mental illnesses or impairments.*
1. Get started early - everything is easier when you don't have to stress about getting everything sorted in time. I first contacted my home social care department in March about getting personal care at uni, it took until this week (Week begininng 25.8.14) to see a social worker. There is a lot to sort and a lot of it takes time to muddle through. It's never too early to start approaching people and gauging what support is out there.
2. It's going to be hard work - as much as nondisabled students may complain about having to jump through hoops to get into and to get everything ready for university as a disabled person you will have at least twice as many things to do. Just keep on top of everything (write a list if you're at risk of forgetting) and you should be okay.
3. Help is out there - the easiest way to get it is to disclose your disability on your UCAS application so the universities know to contact you about any support you might need straight after they make you an offer. If you don't want to do that though you can always disclose directly to the universities after you get a response from them.
4. Check out each university's provision for disabled students before you apply - that way you know what you're in for whichever one you get into. Honestly, I discounted some uni's because their campuses were too hilly!
Try to talk to disabled students who are at or have graduated from that uni and get their feel of things.
Contact the open day organisers in advance and ask to see some accessible accommodation if you're planning on staying in halls (they will show you the nicest, most expensive one!).
Speak to the folks from the disabled students office at the open day, take their contact details and ask them any questions you can think of. Ask what support they offer for students with a disability like yours.
If your disability is mainly physical then make sure to have a look at the Trail Blazers University Challenge report here and see how the universities on your shortlist score on accessibility.
Have a look around as many areas of the campus as possible to check for yourself if it's suitable for you.
5. Apply for Disabled Student's Allowance (DSA) - I was a bit anxious about this with the memories of applying for DLA and ESA (the replacement for Incapacity Benefit) fresh in my mind. If you feel this way then fear not! For me at least, the experience was completely different. One of the advisers at my university's Disability Support Office helped me fill in the form and the Study Needs Assessment really was an assessment of my study needs, not an interrogation.
They can help with all sorts of things (equipment, study support, help in the library, mentoring, taxi fares) so it's worth giving it a go even if you're not certain that you need any extra help.
6. If you need help with personal care at uni you will need to talk the social care/social services department in the area you live now - this one only really applies if you will be moving out of area for uni. If you will still be living within the same council area then ignore this one.
Because it is expected that students will return home out of term time they are classed as "ordinarily resident" in the town of their permanent address. More information about this is available here. Unless you live in a university town then expect you home social services department to be unfamiliar with this. I had to quote the information on the page I linked and then wait for a member of staff to look it up and ask their manager about it.
7. You can keep ESA whilst studying - but only if you receive DLA, PIP or a similar allowance. You have to register a change of circumstances as student maintenance loan counts as income. If you're on income related ESA it receiving a maintenance loan will probably reduce the amount of ESA you're entitled to. More information available here.
However if you recieve DLA/PIP/other and give Student Finance evidence of that any maintenance grant you are entitled to will be given as a "Special Support Grant" and won't affect any income related benefit you get.
8. If you are staying in halls be aware that many uni's adapted rooms are in the newer, more expensive accommodation - if the only rooms that are suitable for you are more expensive than halls you would live in otherwise/halls you can afford you may be able to get a reduction on the rent. You need to talk to the accommodation office and the disabled student's office at your uni about this but it does qualify as indirect discrimination**. It is at the discretion of the university but all five of the ones I applied to agreed (in principal) that I would not have to pay the full rent if their accessible accommodation was more expensive than what I would have otherwise.
9. Make full use of the disabled students' office - the advisers there know what you're likely to need to do to get the help you need. They will be able to help you with things you're anxious about and put you in touch with the right people. They can also help to smooth the transition once you get to uni.
10. You're not alone! - Lots of disabled students go to uni each year and will have been through very similar things, look about on twitter and you'll be sure to find some! If you have any problems the National Union of Students is on your side. Most student unions have a disabled students' rep and nationally the NUS is trying to make life easier for disabled students. They're the folks to go to if you have any disputes related to your disability or ideas of how to improve things.
*Full disclosure, my disability is mainly physical so this post leans more towards physical stuff, I've tried to make it as inclusive as possible but not all points will apply to all people.
**Only providing newer/higher end/expensive accessible accommodation means that you have no option to choose something cheaper when non-disabled students do. Charging you the same rate as students who actively choose to live in pricier accommodation constitute's unfair treatment as a result of disability. I don't think it has been tested in court though so universities are not obliged to reduce the rent.
Where I use the words Disabled or Disability I mean anything that qualifies as a disability under the equality act having a "substantial" and "long-term" negative effect on a person's abilities. This includes both physical and mental illnesses or impairments.*
1. Get started early - everything is easier when you don't have to stress about getting everything sorted in time. I first contacted my home social care department in March about getting personal care at uni, it took until this week (Week begininng 25.8.14) to see a social worker. There is a lot to sort and a lot of it takes time to muddle through. It's never too early to start approaching people and gauging what support is out there.
2. It's going to be hard work - as much as nondisabled students may complain about having to jump through hoops to get into and to get everything ready for university as a disabled person you will have at least twice as many things to do. Just keep on top of everything (write a list if you're at risk of forgetting) and you should be okay.
3. Help is out there - the easiest way to get it is to disclose your disability on your UCAS application so the universities know to contact you about any support you might need straight after they make you an offer. If you don't want to do that though you can always disclose directly to the universities after you get a response from them.
4. Check out each university's provision for disabled students before you apply - that way you know what you're in for whichever one you get into. Honestly, I discounted some uni's because their campuses were too hilly!
Try to talk to disabled students who are at or have graduated from that uni and get their feel of things.
Contact the open day organisers in advance and ask to see some accessible accommodation if you're planning on staying in halls (they will show you the nicest, most expensive one!).
Speak to the folks from the disabled students office at the open day, take their contact details and ask them any questions you can think of. Ask what support they offer for students with a disability like yours.
If your disability is mainly physical then make sure to have a look at the Trail Blazers University Challenge report here and see how the universities on your shortlist score on accessibility.
Have a look around as many areas of the campus as possible to check for yourself if it's suitable for you.
5. Apply for Disabled Student's Allowance (DSA) - I was a bit anxious about this with the memories of applying for DLA and ESA (the replacement for Incapacity Benefit) fresh in my mind. If you feel this way then fear not! For me at least, the experience was completely different. One of the advisers at my university's Disability Support Office helped me fill in the form and the Study Needs Assessment really was an assessment of my study needs, not an interrogation.
They can help with all sorts of things (equipment, study support, help in the library, mentoring, taxi fares) so it's worth giving it a go even if you're not certain that you need any extra help.
6. If you need help with personal care at uni you will need to talk the social care/social services department in the area you live now - this one only really applies if you will be moving out of area for uni. If you will still be living within the same council area then ignore this one.
Because it is expected that students will return home out of term time they are classed as "ordinarily resident" in the town of their permanent address. More information about this is available here. Unless you live in a university town then expect you home social services department to be unfamiliar with this. I had to quote the information on the page I linked and then wait for a member of staff to look it up and ask their manager about it.
7. You can keep ESA whilst studying - but only if you receive DLA, PIP or a similar allowance. You have to register a change of circumstances as student maintenance loan counts as income. If you're on income related ESA it receiving a maintenance loan will probably reduce the amount of ESA you're entitled to. More information available here.
However if you recieve DLA/PIP/other and give Student Finance evidence of that any maintenance grant you are entitled to will be given as a "Special Support Grant" and won't affect any income related benefit you get.
8. If you are staying in halls be aware that many uni's adapted rooms are in the newer, more expensive accommodation - if the only rooms that are suitable for you are more expensive than halls you would live in otherwise/halls you can afford you may be able to get a reduction on the rent. You need to talk to the accommodation office and the disabled student's office at your uni about this but it does qualify as indirect discrimination**. It is at the discretion of the university but all five of the ones I applied to agreed (in principal) that I would not have to pay the full rent if their accessible accommodation was more expensive than what I would have otherwise.
9. Make full use of the disabled students' office - the advisers there know what you're likely to need to do to get the help you need. They will be able to help you with things you're anxious about and put you in touch with the right people. They can also help to smooth the transition once you get to uni.
10. You're not alone! - Lots of disabled students go to uni each year and will have been through very similar things, look about on twitter and you'll be sure to find some! If you have any problems the National Union of Students is on your side. Most student unions have a disabled students' rep and nationally the NUS is trying to make life easier for disabled students. They're the folks to go to if you have any disputes related to your disability or ideas of how to improve things.
*Full disclosure, my disability is mainly physical so this post leans more towards physical stuff, I've tried to make it as inclusive as possible but not all points will apply to all people.
**Only providing newer/higher end/expensive accessible accommodation means that you have no option to choose something cheaper when non-disabled students do. Charging you the same rate as students who actively choose to live in pricier accommodation constitute's unfair treatment as a result of disability. I don't think it has been tested in court though so universities are not obliged to reduce the rent.
Thursday, 15 August 2013
A year with tiny steps.
(Just a note, I've been writing this since about the 4th of July so it's quite some out of sync now)
A year is a funny thing - it feels long but passes super quickly at the same time. There's a lot that changes in a year.
A year is a funny thing - it feels long but passes super quickly at the same time. There's a lot that changes in a year.
This time last year I had been in hospital for five days already into what would be a three week stay. I had no use of my right hand (which was stuck in a fist) and my body was pulling itself into peculiar positions that were so contortionistic that they were dubbed "gymspastics" within our house. My whole body (or near enough) cramped/spasmed for up to two hours at a time between two and five times a day. This was not fun.
To be honest I was on such a huge amount of medication that I cannot remember most of this, just a haze with a few extremely vivid snapshots. All sorts of things were investigated as I spasmed away in my bed - mostly the doctors just scratched their heads and increased muscle relaxants while nurses an my family watched on concerned. A few members of staff stand out from this time some for the loveliest of reasons - some not so much - but I'm sure I've aired my gripes about them plenty.
To be honest I was on such a huge amount of medication that I cannot remember most of this, just a haze with a few extremely vivid snapshots. All sorts of things were investigated as I spasmed away in my bed - mostly the doctors just scratched their heads and increased muscle relaxants while nurses an my family watched on concerned. A few members of staff stand out from this time some for the loveliest of reasons - some not so much - but I'm sure I've aired my gripes about them plenty.
There was a nurse on the AMU (named Leanne I think), my first ward - one of the ones who had treated me on a previous admission who gave the doctors what for when they did not give me chance to speak or did not even try to understand CRPS. She listened when I explained and sat with me through spasms and tears. I'm sure other nurses on that ward did likewise but she stands out.
There was a student nurse, on the second ward, (Seb- whose sister I know) who sat with me an hour and a half past the end of her shift when I was having difficulty breathing which sparked a panic attack. She cooled my head with wet towelly things and helped calm my mind with soft hands and calm patience.
And then there's my pain doctor - The lovely man who educated the ward staff about CRPS and chronic pain, who kept dropping in on me and thinking up ideas despite my technically not being in his care and his working hours being full to the brim already.
This year during the same span as I was in hospital last year I sat exams, baked, read and pottered about in the garden rather than lay in bed in huge pain. I was at a high physically rather than an extreme low. I had next to no panic attacks rather than at least one a day. And I was happy.
A year can bring huge changes, a comparison between now and then shows that the little tiny steps towards health made every day are really really worth it despite the difficulty in doing them.
And then there's my pain doctor - The lovely man who educated the ward staff about CRPS and chronic pain, who kept dropping in on me and thinking up ideas despite my technically not being in his care and his working hours being full to the brim already.
This year during the same span as I was in hospital last year I sat exams, baked, read and pottered about in the garden rather than lay in bed in huge pain. I was at a high physically rather than an extreme low. I had next to no panic attacks rather than at least one a day. And I was happy.
A year can bring huge changes, a comparison between now and then shows that the little tiny steps towards health made every day are really really worth it despite the difficulty in doing them.
Saturday, 30 June 2012
Spasmic fantastic.
For the past month my right had has been a fist, whilst this was not fun I can live with that, thumbs can be used as hooks and pointers - if you're lucky you can slot in things like cutlery and pens. Far far more disruptive has been the full body spasms that have pulled me into positions far more usual for contortionists or gymnasts than tired and pained teens. It's been rather playfully termed in our house doing my "gymspastics".
Twisted limbs, joints about to dislocate, back arches, stomach pulls me forward, legs assume the "smear test" position, an unsupportive and strangled neck, eyes that wont open, lips that wont move, jaws that lock and teeth that bite into lips cheeks and tongue. Communication is strange garbled strangled words, subdo-signing, blinking and strained eye movements.
Well, what is it that's happening?? What can be done to help? Answer who knows. It appears to be some sort of dystonia, this may be to do witth my CRPS it may be something new. So after 3 weeks of increasing baclofen and diazepam i found myselfvon Saturday morning in a hospital bed on AMU having arrived at A&E at 10.30 Friday night 1.5 hours with no spasm and having around three hours of light sleep
Twisted limbs, joints about to dislocate, back arches, stomach pulls me forward, legs assume the "smear test" position, an unsupportive and strangled neck, eyes that wont open, lips that wont move, jaws that lock and teeth that bite into lips cheeks and tongue. Communication is strange garbled strangled words, subdo-signing, blinking and strained eye movements.
Well, what is it that's happening?? What can be done to help? Answer who knows. It appears to be some sort of dystonia, this may be to do witth my CRPS it may be something new. So after 3 weeks of increasing baclofen and diazepam i found myselfvon Saturday morning in a hospital bed on AMU having arrived at A&E at 10.30 Friday night 1.5 hours with no spasm and having around three hours of light sleep
I wrote that early hours of Saturday morning It's now Monday night running up to 11pm. I've been turfed to another ward as space was needed, I feel distinctly less safe here - staffing levels are lower and the nurse on tonight is pretty shirty. i can feel anxiety creeping ever higher. Visiting times are shorter too. On my bay is 5 elderly ladies and me - none look close to death but none particularly healthy.
In other fantastic news both my pain Dr who is the hospital's main crps man and the neurologist are on annual leav which in short means no one has any idea what to do with me. The medication levels I'm on to reduce severity of spasms is not safe at home but I definitely would not be safe at home if they reduced it as the spasms are still intense. As the ward staff noticed last night when they tried not giving me any diazepam* it was a spectacular spasm but with a caring nurse and the one emergency dose I had prescribed we organised me onto a comfortable enough position so I could sleep - but still in spasm.
I wrote out a note for the staff yesterday nice and patronising like the ones they write about the patients. It's attatched to the blog somewhere Today is spasmed still. Mum was here to help. No idea what they're planning on doing with me. Pain is high high high.
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*my drs are anxious about the amount of meds I'm taking and the diazepam is at the "we're a little concerned about this" doseage. On Saturday morning they put a 2 day review on it which to any sane person means review Monday morning but apparently in Dr speak means review sunday night at 10pm where there's not a Dr to be seen. I'm now on a 1 day review which probably means they won't be giving me a dose in the morning like theyre supposed to until a doctor turns up.
Friday, 9 March 2012
Thoughts in pain.
Some days pain consumes me - it is my entire being. Even when I take my emergency pain medication (fairly heavy duty opiates) it's still my main thought, there is little to nothing else. Even when my attention switches to something other than pain it doesn't happen spontaneously I have to really deliberately focus on something, even the smallest thing takes a lot of energy to focus on enough to actually do it; whether that is watching the TV, changing clothes, eating (which is difficult enough anyway) or finding a somewhat comfortable position. When I'm in that state sleep is still not an escape from pain, assuming I manage to fall asleep at all, I feel the pain in my sleep. Pain permeates throughout all of me. The pain in my sleep feels much worse than when I am awake, a testament perhaps to my brain's ability push aside & hide the full extent of my pain, it is scary - more than scary. When it happens I usually wake up crying out and too afraid to go back to sleep in case it happens again. Sleep used to be a refuge, the only time when pain was not a problem, but now it's something to be feared and to worry over every night.
Pain changes your thought patterns, it reduces your ability to think logically, it can stop you thinking of anything but pain at all. Right now for me it feels like swimming in a pool full of treacle; it's slow, it's hard work, it uses a lot of energy and there's no way I'm going to get to the edge right. It's taking me a long time to work out what I want to say, a long time to work out how to phrase it and an even longer time to actually sort out the mechanics of speech (and typing) then once I actually start talking I might find myself saying "umbrella" instead of "cup" because someone just walked past carrying an umbrella. Sometimes I just can't think at all. When I can't think I start to panic, some might think it's a strange reaction but really imagine you're trying to reach for something but neither of your arms will move in fact imagine that they're not there at all and this is all a surprise. Suddenly your arms are gone and you can't do anything; wouldn't you panic? Well, there in my head there are no thoughts no movement of the arms of my brain I can't reach the information I need at all. And this starts the panic, I can't communicate anything, can't communicate what's wrong or how people can help. I'm locked inside my own head with everything I know just out of reach behind an impenetrable mud wall. So yes I panic, sometimes just rapid breathing other times it's huge panic attacks that leave me curled up in a ball until it recedes and then flat on my back for the next 3 or 4 days.
In these minutes, hours and days I lose myself. I can't find who I am, I don't know what I like, I don't know what I want to do, what I want to eat, if I need the loo, I lose everything. I think this is the most terrifying thing. All because of the effect pain has on my brain; on my mind. Pain is nasty, pain is all consuming, pain is punishing it pushes you to the limit and yet you continue on. You fight; you find yourself again; you try to live. Then you do it all again.
Pain changes your thought patterns, it reduces your ability to think logically, it can stop you thinking of anything but pain at all. Right now for me it feels like swimming in a pool full of treacle; it's slow, it's hard work, it uses a lot of energy and there's no way I'm going to get to the edge right. It's taking me a long time to work out what I want to say, a long time to work out how to phrase it and an even longer time to actually sort out the mechanics of speech (and typing) then once I actually start talking I might find myself saying "umbrella" instead of "cup" because someone just walked past carrying an umbrella. Sometimes I just can't think at all. When I can't think I start to panic, some might think it's a strange reaction but really imagine you're trying to reach for something but neither of your arms will move in fact imagine that they're not there at all and this is all a surprise. Suddenly your arms are gone and you can't do anything; wouldn't you panic? Well, there in my head there are no thoughts no movement of the arms of my brain I can't reach the information I need at all. And this starts the panic, I can't communicate anything, can't communicate what's wrong or how people can help. I'm locked inside my own head with everything I know just out of reach behind an impenetrable mud wall. So yes I panic, sometimes just rapid breathing other times it's huge panic attacks that leave me curled up in a ball until it recedes and then flat on my back for the next 3 or 4 days.
In these minutes, hours and days I lose myself. I can't find who I am, I don't know what I like, I don't know what I want to do, what I want to eat, if I need the loo, I lose everything. I think this is the most terrifying thing. All because of the effect pain has on my brain; on my mind. Pain is nasty, pain is all consuming, pain is punishing it pushes you to the limit and yet you continue on. You fight; you find yourself again; you try to live. Then you do it all again.
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