We don't celebrate Halloween here. The holiday is trying to knock our doors but us Swedes are still pretty traditional and having a hard time accepting new holidays. I did manage to get outside today, thanks to taking painkillers before going out. I'm in agony now and needing to take meds again but will try to tough it out.
Called my clinic in the afternoon to discuss a prescription renewal they had forgotten about and told the nurse that something needs to be done ASAP because I can't live like this any longer! I need to get back onto around the clock pain relief, preferably Fentanyl patches as I know they work for me with no side effects at all. I'm sick of experimenting with medicines that doesn't work!
Also told the nurse I need that wheelchair (that I requested about 6 months ago) very soon or preferably last week because I'm very limited on crutches and with the absolutely awful pain I get from the crutches it's likely I'll be house bound very soon because walking just hurts too much and causes too much pain. Even with taking my painkillers, the pain in my hands and wrists gets so intense I don't want to wake up the next day. I'm just 27, I don't want to think such things like "Do I have to wake up tomorrow?" because I'm in so much pain, pain that can be treated with the right medicines and somewhat prevented by having the right aid and supports.
If I could just have a little bit of my life back... Having less pain and be able to go places more... It would be priceless and I don't care how much people stare at me!
Wednesday, October 31, 2012
Tuesday, October 30, 2012
Close to tears...
My hands, especially thumbs, and wrists hurts so bad today I've had to resort to painkillers 3 times today just to have any use of my hands. Walking with crutches has been total agony anyways, resulting in me only going outside because I had to pick up a couple of prescriptions at the pharmacy out of which one couldn't wait until another day.
The level of pain today is making me think "do I have to wake up tomorrow?" so you can imagine, it's bad :(
I'm pretty sure I won't be able to go with my parents to the supermarket tomorrow, it just hurts too much to walk, even with painkillers in my system... The painkillers only take the edge off.
Lower back, hip, knees and ankles are as bad as always so walking unaided is not an option when walking more than within an apartment.
Tried writing some in my diary before. Even with the PenAgain pen, my writing ability is very limited. I get writers cramp in my hand(s)- I'm ambidextrous, very fast even with having the pen that is said to delay or prevent writers cramp. I'm doing a little bit better typing on laptop but that hurts as well and my fingers lock backwards as I'm typing. Can't wait until I have my ring splints!
Going to call my occupational therapist tomorrow and tell her (or the receptionist at the clinic) that I'm not having a good situation at all now with my hands and wrists. Can't go outside the door without being in complete agony!
I'm very close to being house bound, all because I don't have the right aid and not enough pain relief by far. I did discuss going back onto Fentanyl patches with my GP last week, but he couldn't promise anything. Last time I was on it, was when I lived in Denmark and had a GP who wasn't afraid of treating what she couldn't cure. I don't know how long or short days they have in Denmark but my medical records from Denmark were ordered by my Swedish clinic in late February and before I moved from Denmark the receptionist in Denmark said "They just need to order it and we will send it within a few days" when I asked to have it printed to deliver it in person in Sweden. Need I say my medical records still hasn't arrived to my Swedish clinic?
Something needs to be done, and soon! I can't live like this! I'm sick of spending my days in bed or on a sofa because going outside= walking, hurts too fucking much!
Typing hurts too much now... I'd better rest...
The level of pain today is making me think "do I have to wake up tomorrow?" so you can imagine, it's bad :(
I'm pretty sure I won't be able to go with my parents to the supermarket tomorrow, it just hurts too much to walk, even with painkillers in my system... The painkillers only take the edge off.
Lower back, hip, knees and ankles are as bad as always so walking unaided is not an option when walking more than within an apartment.
Tried writing some in my diary before. Even with the PenAgain pen, my writing ability is very limited. I get writers cramp in my hand(s)- I'm ambidextrous, very fast even with having the pen that is said to delay or prevent writers cramp. I'm doing a little bit better typing on laptop but that hurts as well and my fingers lock backwards as I'm typing. Can't wait until I have my ring splints!
Going to call my occupational therapist tomorrow and tell her (or the receptionist at the clinic) that I'm not having a good situation at all now with my hands and wrists. Can't go outside the door without being in complete agony!
I'm very close to being house bound, all because I don't have the right aid and not enough pain relief by far. I did discuss going back onto Fentanyl patches with my GP last week, but he couldn't promise anything. Last time I was on it, was when I lived in Denmark and had a GP who wasn't afraid of treating what she couldn't cure. I don't know how long or short days they have in Denmark but my medical records from Denmark were ordered by my Swedish clinic in late February and before I moved from Denmark the receptionist in Denmark said "They just need to order it and we will send it within a few days" when I asked to have it printed to deliver it in person in Sweden. Need I say my medical records still hasn't arrived to my Swedish clinic?
Something needs to be done, and soon! I can't live like this! I'm sick of spending my days in bed or on a sofa because going outside= walking, hurts too fucking much!
Typing hurts too much now... I'd better rest...
After sun comes rain...
We had a cold, crisp, sunny weekend which was really nice. Now the weather is back to normal and it's rainy and windy again! We're not even anywhere near Hurricane Sandy for that matter, "she" is like 3500 miles away across the Atlantic ocean!
My wrists has had enough now, they're toast, especially left. How I'm supposed to get outside at all tomorrow I don't know, it hurts too much to put any weight on my wrists and walking unaided is not an option :( My meds only took the edge off of the pain, I took a low dose though, could have taken the double but I really don't like doing that, it's bad enough having to resort to pills at all.
Not feeling at all well today, the cold, humid, windy weather goes into my joints, plus the wear and tear on them. Add IBS acting up, giving a fair bit of stomach pain and discomfort...
At least I bought a notebook today, to use as a kind of diary. I'm planning to write down what I do, if I take medicine, how I feel and how I feel about things, and maybe even eventually let my doctor read it to give him an insight in my life as it's difficult to get an idea about it in just a short consultation. With the PenAgain pen I should be able to write more by hand before it hurts too bad, especially once I have my ring splints.
Thumbs hurting too much for typing now... Need to rest...
My wrists has had enough now, they're toast, especially left. How I'm supposed to get outside at all tomorrow I don't know, it hurts too much to put any weight on my wrists and walking unaided is not an option :( My meds only took the edge off of the pain, I took a low dose though, could have taken the double but I really don't like doing that, it's bad enough having to resort to pills at all.
Not feeling at all well today, the cold, humid, windy weather goes into my joints, plus the wear and tear on them. Add IBS acting up, giving a fair bit of stomach pain and discomfort...
At least I bought a notebook today, to use as a kind of diary. I'm planning to write down what I do, if I take medicine, how I feel and how I feel about things, and maybe even eventually let my doctor read it to give him an insight in my life as it's difficult to get an idea about it in just a short consultation. With the PenAgain pen I should be able to write more by hand before it hurts too bad, especially once I have my ring splints.
Thumbs hurting too much for typing now... Need to rest...
Monday, October 29, 2012
It's like having a tooth ache!
Just in the joints instead of in a tooth... I sure am paying for yesterday now! Left hip is nasty and so is my lower back and knees, and my hands are aching pretty bad! The padding of my crutches failed miserably, it was enough to walk from my parents place to home with it on the crutches and wearing my thumb splints and my skin was getting rubbed and sore. With padding but without splints, I still found the crutches to be too big to hold so it hurt my hands even though it was nice with the softer surface, the grip was just too big! The very big grips of the crutches also hurt my right thumb, making it nearly as bad as my left thumb in just minutes... It's now been pretty much decided that I will order a pair of SmartCrutches as they take the pressure from wrists and have smaller, softer handle than regular forearm crutches. It won't help my legs much, but it will help my hands and arms, making it hurt less to walk. Looking at cost, some anatomically correct crutches can cost as much each and have less possibility of adjustments, than the SmartCrutches which are sold in pairs and can be adjusted in many ways.
Forgot to mention yesterday that mum, grandmother and I went to an American bakery shop in Gothenburg yesterday and mum and grandmother got their JellyBelly jelly beans and mum and I bought Red velvet cupcakes to bring home for the coffee, also bought a slice of Lemon meringue pie which my parents and I shared. All of us really liked the Red velvet cupcake, but the lemon meringue pie was kinda sickening sweet. But anyways, will definitely get the Red velvet cake or cupcake again :) We're going to that shop again sometime and it's also a cafe so we'll have some coffee and cake there then, at that time I will for sure try the Red velvet cake as it looks different than the cupcake version, it was just easier to bring as cupcakes than trying to carry a box with 3 slices of cake and try to make the cake pieces stand up all the way back to hometown with having lunch at a restaurant before taking the train back.
Can't type much more now... Aching too much all over, including hands... Trying to tough it out without taking anything for it.
To all my friends on the American East coast: Stay safe in the hurricane! I'm thinking of you!
Forgot to mention yesterday that mum, grandmother and I went to an American bakery shop in Gothenburg yesterday and mum and grandmother got their JellyBelly jelly beans and mum and I bought Red velvet cupcakes to bring home for the coffee, also bought a slice of Lemon meringue pie which my parents and I shared. All of us really liked the Red velvet cupcake, but the lemon meringue pie was kinda sickening sweet. But anyways, will definitely get the Red velvet cake or cupcake again :) We're going to that shop again sometime and it's also a cafe so we'll have some coffee and cake there then, at that time I will for sure try the Red velvet cake as it looks different than the cupcake version, it was just easier to bring as cupcakes than trying to carry a box with 3 slices of cake and try to make the cake pieces stand up all the way back to hometown with having lunch at a restaurant before taking the train back.
Can't type much more now... Aching too much all over, including hands... Trying to tough it out without taking anything for it.
To all my friends on the American East coast: Stay safe in the hurricane! I'm thinking of you!
Sunday, October 28, 2012
Gothenburg
Mum and I did take the train down to Gothenburg today. I was feeling surprisingly well when waking up this morning so I decided we'd go. We arrived in Gothenburg at 11am and took a tram to a nearby tram stop from the rehab shop is located and waited for my grandmother to arrive too before we went to the rehab shop. I found a whole lot of useful things in that shop I must say! I bought a PenAgain pen and a key ring with pill container, the key ring will save me so much space as I can bring two of my normal doses (that can also be one increased dose in case of really BAD pain) of meds in it, and I always carry my keys! Now no more medicine containers and blister packs littering in my tiny handbag!
I also bought some kind of padding for my crutches, and while it does make it softer for the hands, the grip just gets too big so I think it's a fail :( The grip is too big so I can't walk with the crutches and wear my thumb splints at the same time! The thumb splints rub on my skin over the MCP joint just like the old splints did and my new ones are MUCH softer and shouldn't rub at all! I found this out the hard way when walking home from parents place tonight, it's a very short distance, takes only a couple of minutes for someone who can walk freely, and it was enough for the splint to make my thumbs really sore thanks to the grip being bigger on the crutches from padding.
I think I'll have to order a pair of smart crutches soon as those are made for issues like this: People having issues with forearm crutches! I could of course get another kind of forearm crutches too, with the softer, anatomical grip, but those are nearly as pricey as the SmartCrutch and the SmartCrutch is more adaptable and it comes in more fancy colors.
I'm really shattered now, time to sleep!
I also bought some kind of padding for my crutches, and while it does make it softer for the hands, the grip just gets too big so I think it's a fail :( The grip is too big so I can't walk with the crutches and wear my thumb splints at the same time! The thumb splints rub on my skin over the MCP joint just like the old splints did and my new ones are MUCH softer and shouldn't rub at all! I found this out the hard way when walking home from parents place tonight, it's a very short distance, takes only a couple of minutes for someone who can walk freely, and it was enough for the splint to make my thumbs really sore thanks to the grip being bigger on the crutches from padding.
I think I'll have to order a pair of smart crutches soon as those are made for issues like this: People having issues with forearm crutches! I could of course get another kind of forearm crutches too, with the softer, anatomical grip, but those are nearly as pricey as the SmartCrutch and the SmartCrutch is more adaptable and it comes in more fancy colors.
I'm really shattered now, time to sleep!
Saturday, October 27, 2012
Feeling more human
Today I've been feeling more human than in the entire week, even though I had an appointment in neighbor town at 9:45 this morning and I'm usually still asleep at that time.
Had an appointment with a occupational therapist who's dealing with hands a lot! Got a couple of new thumb splints and I'm put on a list to get fitted for silver ring splint for my left thumb once the fitting kit arrives to the rehabilitation center from the company in America making the ring splints (silverringsplint.com). I also got fitted for plastic ring splints today and ordered one for index finger, one for middle finger and one for ring finger. The index and middle finger rings are mainly for left hand to give me a better grip but I have the same size on right hand so will wear them there when my fingers there need better support, like if I need to write by hand. Ring finger splint is for right ring finger as it goes swan neck often when I close my hand, I'm going to wear the splint to prevent that finger from going as bad as the fingers on my left hand.
I'm currently wearing my new thumb splints now and they're great! They're considered rigid but they have no hard pieces in them, just an extra layer of the soft side of velcro which makes the fabric more rigid around the thumb and MCP joint. It's surprisingly stable but at the same time it doesn't immobilize the thumb very much. It's so comfy to wear I may actually sleep with them on tonight, just to give my thumbs and wrists a rest from odd positions. I often wake up with at least one wrist bent at over 90 degrees and that's definitely not good!
I'll be getting my plastic ring splints on November 20th, and during that appointment I'll also have special resting splints made for my wrists to wear when resting or sleeping, it will be custom made with Ortho plastic to fit me perfectly :)
Since I'm feeling much more energized today and in less pain than in the whole week, I've decided I feel fit enough to go to Gothenburg tomorrow! Mum and I will take a morning train, probably at 10:17 from my hometown. I'll be going to a rehab shop in Gothenburg and get those ice picks thingies to put on my crutches as winter is approaching fast now, in fact, today I wore my winter boots! Last night we got a little bit of snow hail (hail that is like small snowballs) and right now it's like -3C outside so it's going to get slippery outside soon! The first snow came yesterday in the shape of that snow like hail, and we're expecting snow slush or snow in a few days time.
Mum and I will also go to an American bakery in a mall in Gothenburg where they sell Jelly Belly jelly beans which mum and my grandmother are addicted to. I'll probably try Red velvet cake and maybe buy some nice cupcakes to bring home only because I haven't tried it before and we don't find American style cupcakes here often at all!
Oh well, I should try to catch some sleep now. Need to get up at about 7:30 or 8 in the morning to take a shower, dry hair and be at parents place at about 9 to have some breakfast (so my parents SEE that I eat something before going to Gothenburg) and then off to the station.
Hands are bothering me now anyways, hurts to type >.<
Had an appointment with a occupational therapist who's dealing with hands a lot! Got a couple of new thumb splints and I'm put on a list to get fitted for silver ring splint for my left thumb once the fitting kit arrives to the rehabilitation center from the company in America making the ring splints (silverringsplint.com). I also got fitted for plastic ring splints today and ordered one for index finger, one for middle finger and one for ring finger. The index and middle finger rings are mainly for left hand to give me a better grip but I have the same size on right hand so will wear them there when my fingers there need better support, like if I need to write by hand. Ring finger splint is for right ring finger as it goes swan neck often when I close my hand, I'm going to wear the splint to prevent that finger from going as bad as the fingers on my left hand.
I'm currently wearing my new thumb splints now and they're great! They're considered rigid but they have no hard pieces in them, just an extra layer of the soft side of velcro which makes the fabric more rigid around the thumb and MCP joint. It's surprisingly stable but at the same time it doesn't immobilize the thumb very much. It's so comfy to wear I may actually sleep with them on tonight, just to give my thumbs and wrists a rest from odd positions. I often wake up with at least one wrist bent at over 90 degrees and that's definitely not good!
I'll be getting my plastic ring splints on November 20th, and during that appointment I'll also have special resting splints made for my wrists to wear when resting or sleeping, it will be custom made with Ortho plastic to fit me perfectly :)
Since I'm feeling much more energized today and in less pain than in the whole week, I've decided I feel fit enough to go to Gothenburg tomorrow! Mum and I will take a morning train, probably at 10:17 from my hometown. I'll be going to a rehab shop in Gothenburg and get those ice picks thingies to put on my crutches as winter is approaching fast now, in fact, today I wore my winter boots! Last night we got a little bit of snow hail (hail that is like small snowballs) and right now it's like -3C outside so it's going to get slippery outside soon! The first snow came yesterday in the shape of that snow like hail, and we're expecting snow slush or snow in a few days time.
Mum and I will also go to an American bakery in a mall in Gothenburg where they sell Jelly Belly jelly beans which mum and my grandmother are addicted to. I'll probably try Red velvet cake and maybe buy some nice cupcakes to bring home only because I haven't tried it before and we don't find American style cupcakes here often at all!
Oh well, I should try to catch some sleep now. Need to get up at about 7:30 or 8 in the morning to take a shower, dry hair and be at parents place at about 9 to have some breakfast (so my parents SEE that I eat something before going to Gothenburg) and then off to the station.
Hands are bothering me now anyways, hurts to type >.<
Friday, October 26, 2012
The big meeting
I had the meeting this morning after a pretty much sleepless night. I was being kept awake by pain even though I had taken painkiller and once I finally fell asleep, it was impossible to stay asleep. Anyways, the meeting this morning went really well, apart from me being in complete agony while sitting for an hour on the chair in my doctors office. I was close to tears from pain most of that hour the meeting took, but at least my doctor, physiotherapist, occupational therapist and my Insurance person could see what my situation really is like and everyone agreed that I'm NOT fit for work at any conventional workplace. The Insurance person even suggested I apply for disability for people under age 30 so that's probably the road I'll take. It's definitely not fun having to make such a decision at age 27 but at the moment, I see no other way unless working from home one way or another and working from home is very uncommon here.
As a big surprise to me, my occupational therapist mentioned I may be eligible for a powerchair or mobility scooter to better get around within my town to spare my arms and legs. I'm not sure what to think of it, in a way it could be good, in another way I'm not sure I'm quite ready for it. It was hard enough making the decision that I need a manual wheelchair for bad days or long days out and trips out of town.
I'll see really...
After the meeting I went home, took a quick shower and then dozed off for 45 minutes before getting ready for my other meeting today. Other meeting also went well and after having dinner in the afternoon I took a nap of probably about 2 hours. Been tired all evening but at least feeling more alive now than I did this morning! Haven't needed more painkillers since the ones I took when I got back home from the first meeting today, hoping for an early night tonight as I haven't slept before 4am any day this week.
Probably putting away laptop for the night very soon, just relax for a while and then sleep.
As a big surprise to me, my occupational therapist mentioned I may be eligible for a powerchair or mobility scooter to better get around within my town to spare my arms and legs. I'm not sure what to think of it, in a way it could be good, in another way I'm not sure I'm quite ready for it. It was hard enough making the decision that I need a manual wheelchair for bad days or long days out and trips out of town.
I'll see really...
After the meeting I went home, took a quick shower and then dozed off for 45 minutes before getting ready for my other meeting today. Other meeting also went well and after having dinner in the afternoon I took a nap of probably about 2 hours. Been tired all evening but at least feeling more alive now than I did this morning! Haven't needed more painkillers since the ones I took when I got back home from the first meeting today, hoping for an early night tonight as I haven't slept before 4am any day this week.
Probably putting away laptop for the night very soon, just relax for a while and then sleep.
Thursday, October 25, 2012
Big meeting tomorrow.
Have a big meeting tomorrow at 9am, stupid ass time for a meeting when the person the meeting is about (me) is a hopeless insomniac who's often kept awake until the early morning hours either by pain like last night, or having a mind working like a washing machine doing the spins, or a combination of both. Anyways, last night I didn't sleep until I think 5:30am this morning and I woke up several times during the morning despite having taken Zopiclon before eventually trying to sleep.
The big meeting tomorrow consists of me, my doctor, my occupational therapist, my contact person from the citizen office in my town, a person from the employment office, my contact person at the national insurance thingy and maybe someone more I just don't know about now, or have forgotten. Basically, this meeting is going to "decide" what I can and can not do because of the fact that I'm currently long term sick and unable to take a conventional job or even do some kind of internship. I know my body best, and if they try to push me towards taking a part time job or internship, I just know it won't work!
Reasons why it won't work?:
- I don't sleep
- I have difficulties to focus on things for more than a few minutes at a time
- I can't sit on a chair at a table for more than a few minutes
- I can't stand up for more than a few minutes
- I can't walk well, even with crutches
- I can't drive every day
- I'm constantly fighting severe fatigue
- I can't commute
- Stress makes me feel worse
- I'm in too much pain
- I spend most of my time either in bed or on a sofa, trying to be as comfortable as possible
I've had over a year to think of what CAN I do within the conventional work market, and after many months of looking through job advertisements and thinking, I've found out that I can do absolutely NOTHING out there on the conventional market. If I am to work at all, and not retire due to my health, I can only work from home, at times which fit me and without pressure to perform every day, as some days I'm just too tired to even think.
I'm also going to bring up wheelchair again tomorrow as my occupational therapist and doctor will be in the same room at the same time. I know I've read somewhere that EDS patients that can't walk unaided should avoid crutches, canes or rollator at any cost! If aid is needed, wheelchair it is. I just can't find where I read it so can't print it and bring tomorrow! But I have read it somewhere, and here I am, having been on crutches for the past 7-8 weeks due to dodgy knees and a bad hip. My hands HURTS and my shoulders are really bad now, my left shoulder subluxes for basically nothing. I know self propelling a wheelchair isn't easy, but at least each roll of the wheels gets you further than a step on crutches, and someone CAN push me in a wheelchair if needed, no one can help me when I'm on crutches.
And for those who think I'm lazy. You're WRONG! Do you really think I enjoy being at home doing little or nothing all day? Do you really think it's fun having just turned 27 and having to consider retirement already? Do you really think it's fun having to stay at home because legs won't work properly and crutches are too tiring and painful? Do you really think I WANT to be in a wheelchair and have people stare at me more than they already do?
I WANT to work, I miss the days where I'd work full time in a warehouse, commute an hour each way and play table tennis around the table in my breaks. I miss not needing any aid to walk, I miss functioning without strong painkillers with me, I miss being spontaneous with going places, I miss being able to spend a day out and not ending up in bed for days afterwards. I miss my old life, the life I had before EDS showed its ugly face on full time!
I'm choosing to get a wheelchair because I NEED one, to get a part of my life back, be able to be outside more and go places without wasting all my spoons on it as fast. I want to be able to have a day out at a mall with family or friends, without needing to go back to the car minutes after arriving. With a wheelchair I might even be able to try going out to a bar if I want to. I wouldn't be able to as it is today as I can't stand in line, can't sit on uncomfortable chairs etc. A wheelchair will give me a part of my life back!
The days of wheelchair racing through the corridors of a nursing home are long gone, it was fun then, when I was a child and borrowed my adoptive grandmother's wheelchair. Now I need one (much lighter than the chair I played in during my childhood!) to get some of my mobility back.
Right... I should remember to mention my pain levels tomorrow in the meeting as well, see if the doctor can do something about it there and then already, but most likely I'll need to make a separate appointment.
At the moment, it's unbearable a lot of the time and I've taken painkillers almost daily lately to cope...
The big meeting tomorrow consists of me, my doctor, my occupational therapist, my contact person from the citizen office in my town, a person from the employment office, my contact person at the national insurance thingy and maybe someone more I just don't know about now, or have forgotten. Basically, this meeting is going to "decide" what I can and can not do because of the fact that I'm currently long term sick and unable to take a conventional job or even do some kind of internship. I know my body best, and if they try to push me towards taking a part time job or internship, I just know it won't work!
Reasons why it won't work?:
- I don't sleep
- I have difficulties to focus on things for more than a few minutes at a time
- I can't sit on a chair at a table for more than a few minutes
- I can't stand up for more than a few minutes
- I can't walk well, even with crutches
- I can't drive every day
- I'm constantly fighting severe fatigue
- I can't commute
- Stress makes me feel worse
- I'm in too much pain
- I spend most of my time either in bed or on a sofa, trying to be as comfortable as possible
I've had over a year to think of what CAN I do within the conventional work market, and after many months of looking through job advertisements and thinking, I've found out that I can do absolutely NOTHING out there on the conventional market. If I am to work at all, and not retire due to my health, I can only work from home, at times which fit me and without pressure to perform every day, as some days I'm just too tired to even think.
I'm also going to bring up wheelchair again tomorrow as my occupational therapist and doctor will be in the same room at the same time. I know I've read somewhere that EDS patients that can't walk unaided should avoid crutches, canes or rollator at any cost! If aid is needed, wheelchair it is. I just can't find where I read it so can't print it and bring tomorrow! But I have read it somewhere, and here I am, having been on crutches for the past 7-8 weeks due to dodgy knees and a bad hip. My hands HURTS and my shoulders are really bad now, my left shoulder subluxes for basically nothing. I know self propelling a wheelchair isn't easy, but at least each roll of the wheels gets you further than a step on crutches, and someone CAN push me in a wheelchair if needed, no one can help me when I'm on crutches.
And for those who think I'm lazy. You're WRONG! Do you really think I enjoy being at home doing little or nothing all day? Do you really think it's fun having just turned 27 and having to consider retirement already? Do you really think it's fun having to stay at home because legs won't work properly and crutches are too tiring and painful? Do you really think I WANT to be in a wheelchair and have people stare at me more than they already do?
I WANT to work, I miss the days where I'd work full time in a warehouse, commute an hour each way and play table tennis around the table in my breaks. I miss not needing any aid to walk, I miss functioning without strong painkillers with me, I miss being spontaneous with going places, I miss being able to spend a day out and not ending up in bed for days afterwards. I miss my old life, the life I had before EDS showed its ugly face on full time!
I'm choosing to get a wheelchair because I NEED one, to get a part of my life back, be able to be outside more and go places without wasting all my spoons on it as fast. I want to be able to have a day out at a mall with family or friends, without needing to go back to the car minutes after arriving. With a wheelchair I might even be able to try going out to a bar if I want to. I wouldn't be able to as it is today as I can't stand in line, can't sit on uncomfortable chairs etc. A wheelchair will give me a part of my life back!
The days of wheelchair racing through the corridors of a nursing home are long gone, it was fun then, when I was a child and borrowed my adoptive grandmother's wheelchair. Now I need one (much lighter than the chair I played in during my childhood!) to get some of my mobility back.
Right... I should remember to mention my pain levels tomorrow in the meeting as well, see if the doctor can do something about it there and then already, but most likely I'll need to make a separate appointment.
At the moment, it's unbearable a lot of the time and I've taken painkillers almost daily lately to cope...
Wednesday, October 24, 2012
Painsomnia!
Anyone living with pain has most likely experienced this at some point. You're really sleepy, but can't get comfortable enough to actually fall asleep. Whatever you do, however you sit or lay down, it just hurts! The whole bed feels like it's full of peas and you're the princess in the fairy tale.
I'm having one of those nights tonight. It's 4:45am as I'm typing this and I have not slept yet. Doesn't matter what I do, I'm just in too much discomfort. Took my painkiller and muscle relaxant about 11pm-ish and then again roughly an hour ago and it has only taken the edge off the pain, but nowhere near relief enough to fall asleep.
I'm severely low on spoons today in general. Several nights of insomnia has taken its toll on me, and now this! Barely had the energy to go outside my apartment today, but did somehow manage to go to my parents for an hour around dinner time. Other than that, the day has been spent at home, in bed, or laying on the sofa, fighting fatigue from hell and a lot of pain.
Unless miracles happens, tomorrow will be spent the same way as today: In bed or on the sofa. I'm not going to my weekly hydrotherapy session this week due to being a woman and I would have likely not attended this week anyways due to how I feel. I barely have the energy to move, so driving is out of the question, and exercising while feeling like this would spell disaster.
In the afternoon when I came back home from my parents, I was actually crying my eyes out because of how I'm feeling at the moment. I only just managed to not cry while at parents place or start bawling outside where people could have seen me.
Not too sure I'll manage to go with parents for the weekly grocery shopping round in the afternoon today even. I always go with them normally...
5am... If I don't fall asleep soon, I might just go fetch a frying pan and knock myself out with it :(
I'm having one of those nights tonight. It's 4:45am as I'm typing this and I have not slept yet. Doesn't matter what I do, I'm just in too much discomfort. Took my painkiller and muscle relaxant about 11pm-ish and then again roughly an hour ago and it has only taken the edge off the pain, but nowhere near relief enough to fall asleep.
I'm severely low on spoons today in general. Several nights of insomnia has taken its toll on me, and now this! Barely had the energy to go outside my apartment today, but did somehow manage to go to my parents for an hour around dinner time. Other than that, the day has been spent at home, in bed, or laying on the sofa, fighting fatigue from hell and a lot of pain.
Unless miracles happens, tomorrow will be spent the same way as today: In bed or on the sofa. I'm not going to my weekly hydrotherapy session this week due to being a woman and I would have likely not attended this week anyways due to how I feel. I barely have the energy to move, so driving is out of the question, and exercising while feeling like this would spell disaster.
In the afternoon when I came back home from my parents, I was actually crying my eyes out because of how I'm feeling at the moment. I only just managed to not cry while at parents place or start bawling outside where people could have seen me.
Not too sure I'll manage to go with parents for the weekly grocery shopping round in the afternoon today even. I always go with them normally...
5am... If I don't fall asleep soon, I might just go fetch a frying pan and knock myself out with it :(
Tuesday, October 23, 2012
Pain management.
I got inspired to write this post today from a brief discussion about painkillers on Twitter earlier.
We're many out there living with an invisible or visible illness that causes debilitating pain, and more often than not, we have to fight hard to get proper pain management! Especially people with so called invisible illnesses has to fight a lot, a common belief seems to be "If it can't be seen, it's all in your head" which really isn't the case for the person living with the pain!
Why does it have to be so damn difficult to get the right medication to live a decent life? Part of the answer is doctors lack of knowledge about pain management, even pain specialists lack in knowledge when it comes to pain not caused by cancer.
Another big reason we have to fight so hard is all the fakers that just want narcotic painkillers for recreational use, and claim they have a lot of pain! That's probably our biggest issue, for how can the doctor see if you ARE in pain or not?
There are ways to see if a person is in real pain or not, it can be seen on how the person moves, how the person is sitting and it can be seen in the eyes, just as examples. On me, my pain is pretty obvious, I can't walk normal- I often walk very carefully as if I have eggs under my feet, and I may have a limp at times. When I sit down on a chair, I either go rigid or can't sit still, I keep shifting position constantly in desperate attempts to get more comfortable! After a short while of sitting, I often sink down towards the table because my back hurts so bad I can't keep it up.
My condition is considered invisible, and you really wouldn't know I'm sick if I'm having a good day pain wise and feel okay in my joints. I don't look sick, it can't be seen on the outside how much pain I'm in. It's not until a joint dislocates or subluxes that you can really see something is seriously wrong with my body, unless you have sharp eyes and notice how my knees are hyperextended when standing or see me using my hands that is...
I have decent pain management now, but I was fighting for months to get there. Doctors saying I was too young to be in so much pain and put on strong painkillers, pain is relentless, it doesn't give a blithering fuck if you're 1 month old, or 99+ years old, pain hits you hard and brutally!
I'm finally being taken seriously by my doctor now, and I get the right medicine that at least gives me some relief for a few hours. It's far from enough, but my situation is at least bearable most of the time.
I know far too many people with EDS and other invisible, painful conditions that are not taken seriously by their doctors or by the society, they get the "it's all in your head" "You're just lazy" and the all time favorite from doctors "Opiates are SO addictive!" It's just wrong, wrong and WRONG!
While yes, opiates may be addictive, but that does NOT mean that everyone gets addicted to it. In fact, addiction is very rare among chronic pain patients because we use the substance for the right reason and we use the right substance, and which substance that is, is highly individual. What works for some, may not work for others. Someone tolerate one medicine but not the other, it takes time to find the right treatment, and often times doctors just prescribe you one thing and are very reluctant to give you anything else even if your current medication doesn't work at all for you.
Doctors also have their magic God pill that cures everyone and everything in their opinion: Amitriptyline!
What they don't realize is that Amitriptyline and other medicines similar to it, only works for a small number of people, and for some types of pain, the dose also needs to be increased slowly and if and when you quit the medicine, you need to taper it out slowly, it also comes with a list of side effects about as long as the old testament!
This is what doctors like to prescribe instead of prescribing a real painkiller, my own doctor tried to fool me into trying Amitriptyline just a few months ago, but sadly for him, I had read a lot about it and wouldn't touch it!
We're constantly warned about opiates and how addictive they are and blah blah blah and as I said above, yes, they may be addictive, but the risk of addiction for a chronic pain patient is low, very low, and we definitely don't take the medicine because it's fun, we take it because we have to to have a better quality of life! If you have the right opiate (if you take opiates) you're not likely to experience any side effects and you're not likely to feel that high that drug addicts seek. The only thing that happens when taking the medicine is that you hopefully get that feeling of the pain just running off you, like a drop of water on a duck feather and feeling more human for a while.
I'm on Oxycodone, after spending many months on high doses of Tramadol that did nothing for me, getting the same poor results with Co-codamol and having no effect whatsoever from NSAID. In between the Tramadol and Co-codamol I was on Fentanyl patches for a few months, the patches were a blessing with adhesive on! By far the best pain management I've had! It was a working pain management that was taken away from me due to moving countries and having to change doctor, the new doctor having the all too famous fear of opiates.
As much as I hated the patches for what they were while I were on them, I loved them for how they made me feel! I had very good relief around the clock from them, meaning I had more energy to do things instead of wasting my energy on pain. I have the same love-hate relationship with Oxycodone now. I hate taking them, but I get part of my life back when I do resort to them. I'm not an addict, nor a druggie, I'm a person living with debilitating pain. I get no side effects from my medicines, I don't get high, I feel nothing except for pain relief. When I don't take my medicine, I feel nothing other than the physical pain I always live with, I have no withdrawal symptoms at all and have never had even when going from max doses of something to zero overnight after taking a substance daily for months.
Another part of the "it's so addictive" nonsense is: If a chronic pain patient does become addicted (even though it's very rare) it doesn't really matter anyways, it's not like the person is going to come off the medicine anyways, in case you haven't noticed, chronic pain is CHRONIC!
This is the part of pain management many doctors know too little about and understand very poorly. I know I'm not alone with my experiences regarding lack of addiction and lack of withdrawal symptoms when it comes to strong medicines.
I hate having to take painkillers that are classed as narcotics, but sadly nothing else works for me. I wish I didn't need to take painkillers at all, not even Paracetamol but my condition makes me having to deal with a lot of pain, sometimes the pain is just too much to handle so I can't just tough it out, or pain makes my brain go haywire from all the pain signals, then I do need some relief, if so even for just a few hours.
I'm never pain free, nor do I expect to be, I'm not even sure I've ever been pain free in my whole life to be honest.
A pain specialist in Sweden once said that painkillers for a pain patient is like insulin to an insulin dependent diabetic: Both take their medicine to get a better quality of life and survive. Taking away or denying a pain patient proper pain management is like prescribing too little or no insulin to the diabetic. Both the diabetic and pain patient might survive, at least for a while but their quality of life may be very very low. The diabetic with too little or without insulin would eventually die from complications of high blood glucose, the pain patient may see no other way out than suicide to end the suffering, or suffocate while being passed out from too much pain. It has happened in the past, and it happens still that pain patients take their own life or pass out from their pain, and it can be avoided, with the right medicine!
I have one thing to say to druggies that fake pain to get narcotic classed painkillers: FUCK YOU! FUCK YOU HARD AND BRUTALLY FOR MAKING US PAIN PATIENTS HAVING TO STRUGGLE SO MUCH FOR THE RIGHT TREATMENT, MAKING US GETTING LOOKED UPON LIKE ADDICTS AND HAVING OUR CONDITIONS QUESTIONED CONSTANTLY! It wastes a lot of energy having to fight for the right treatment, energy that could have been used on more fun things!
We're many out there living with an invisible or visible illness that causes debilitating pain, and more often than not, we have to fight hard to get proper pain management! Especially people with so called invisible illnesses has to fight a lot, a common belief seems to be "If it can't be seen, it's all in your head" which really isn't the case for the person living with the pain!
Why does it have to be so damn difficult to get the right medication to live a decent life? Part of the answer is doctors lack of knowledge about pain management, even pain specialists lack in knowledge when it comes to pain not caused by cancer.
Another big reason we have to fight so hard is all the fakers that just want narcotic painkillers for recreational use, and claim they have a lot of pain! That's probably our biggest issue, for how can the doctor see if you ARE in pain or not?
There are ways to see if a person is in real pain or not, it can be seen on how the person moves, how the person is sitting and it can be seen in the eyes, just as examples. On me, my pain is pretty obvious, I can't walk normal- I often walk very carefully as if I have eggs under my feet, and I may have a limp at times. When I sit down on a chair, I either go rigid or can't sit still, I keep shifting position constantly in desperate attempts to get more comfortable! After a short while of sitting, I often sink down towards the table because my back hurts so bad I can't keep it up.
My condition is considered invisible, and you really wouldn't know I'm sick if I'm having a good day pain wise and feel okay in my joints. I don't look sick, it can't be seen on the outside how much pain I'm in. It's not until a joint dislocates or subluxes that you can really see something is seriously wrong with my body, unless you have sharp eyes and notice how my knees are hyperextended when standing or see me using my hands that is...
I have decent pain management now, but I was fighting for months to get there. Doctors saying I was too young to be in so much pain and put on strong painkillers, pain is relentless, it doesn't give a blithering fuck if you're 1 month old, or 99+ years old, pain hits you hard and brutally!
I'm finally being taken seriously by my doctor now, and I get the right medicine that at least gives me some relief for a few hours. It's far from enough, but my situation is at least bearable most of the time.
I know far too many people with EDS and other invisible, painful conditions that are not taken seriously by their doctors or by the society, they get the "it's all in your head" "You're just lazy" and the all time favorite from doctors "Opiates are SO addictive!" It's just wrong, wrong and WRONG!
While yes, opiates may be addictive, but that does NOT mean that everyone gets addicted to it. In fact, addiction is very rare among chronic pain patients because we use the substance for the right reason and we use the right substance, and which substance that is, is highly individual. What works for some, may not work for others. Someone tolerate one medicine but not the other, it takes time to find the right treatment, and often times doctors just prescribe you one thing and are very reluctant to give you anything else even if your current medication doesn't work at all for you.
Doctors also have their magic God pill that cures everyone and everything in their opinion: Amitriptyline!
What they don't realize is that Amitriptyline and other medicines similar to it, only works for a small number of people, and for some types of pain, the dose also needs to be increased slowly and if and when you quit the medicine, you need to taper it out slowly, it also comes with a list of side effects about as long as the old testament!
This is what doctors like to prescribe instead of prescribing a real painkiller, my own doctor tried to fool me into trying Amitriptyline just a few months ago, but sadly for him, I had read a lot about it and wouldn't touch it!
We're constantly warned about opiates and how addictive they are and blah blah blah and as I said above, yes, they may be addictive, but the risk of addiction for a chronic pain patient is low, very low, and we definitely don't take the medicine because it's fun, we take it because we have to to have a better quality of life! If you have the right opiate (if you take opiates) you're not likely to experience any side effects and you're not likely to feel that high that drug addicts seek. The only thing that happens when taking the medicine is that you hopefully get that feeling of the pain just running off you, like a drop of water on a duck feather and feeling more human for a while.
I'm on Oxycodone, after spending many months on high doses of Tramadol that did nothing for me, getting the same poor results with Co-codamol and having no effect whatsoever from NSAID. In between the Tramadol and Co-codamol I was on Fentanyl patches for a few months, the patches were a blessing with adhesive on! By far the best pain management I've had! It was a working pain management that was taken away from me due to moving countries and having to change doctor, the new doctor having the all too famous fear of opiates.
As much as I hated the patches for what they were while I were on them, I loved them for how they made me feel! I had very good relief around the clock from them, meaning I had more energy to do things instead of wasting my energy on pain. I have the same love-hate relationship with Oxycodone now. I hate taking them, but I get part of my life back when I do resort to them. I'm not an addict, nor a druggie, I'm a person living with debilitating pain. I get no side effects from my medicines, I don't get high, I feel nothing except for pain relief. When I don't take my medicine, I feel nothing other than the physical pain I always live with, I have no withdrawal symptoms at all and have never had even when going from max doses of something to zero overnight after taking a substance daily for months.
Another part of the "it's so addictive" nonsense is: If a chronic pain patient does become addicted (even though it's very rare) it doesn't really matter anyways, it's not like the person is going to come off the medicine anyways, in case you haven't noticed, chronic pain is CHRONIC!
This is the part of pain management many doctors know too little about and understand very poorly. I know I'm not alone with my experiences regarding lack of addiction and lack of withdrawal symptoms when it comes to strong medicines.
I hate having to take painkillers that are classed as narcotics, but sadly nothing else works for me. I wish I didn't need to take painkillers at all, not even Paracetamol but my condition makes me having to deal with a lot of pain, sometimes the pain is just too much to handle so I can't just tough it out, or pain makes my brain go haywire from all the pain signals, then I do need some relief, if so even for just a few hours.
I'm never pain free, nor do I expect to be, I'm not even sure I've ever been pain free in my whole life to be honest.
A pain specialist in Sweden once said that painkillers for a pain patient is like insulin to an insulin dependent diabetic: Both take their medicine to get a better quality of life and survive. Taking away or denying a pain patient proper pain management is like prescribing too little or no insulin to the diabetic. Both the diabetic and pain patient might survive, at least for a while but their quality of life may be very very low. The diabetic with too little or without insulin would eventually die from complications of high blood glucose, the pain patient may see no other way out than suicide to end the suffering, or suffocate while being passed out from too much pain. It has happened in the past, and it happens still that pain patients take their own life or pass out from their pain, and it can be avoided, with the right medicine!
I have one thing to say to druggies that fake pain to get narcotic classed painkillers: FUCK YOU! FUCK YOU HARD AND BRUTALLY FOR MAKING US PAIN PATIENTS HAVING TO STRUGGLE SO MUCH FOR THE RIGHT TREATMENT, MAKING US GETTING LOOKED UPON LIKE ADDICTS AND HAVING OUR CONDITIONS QUESTIONED CONSTANTLY! It wastes a lot of energy having to fight for the right treatment, energy that could have been used on more fun things!
Sunday, October 21, 2012
Just don't know anymore...
There's so much inside that I'd need to just let out at the moment but no one would understand and I'm not sure I'm ready to tell the whole internet...
To put it simple: I'm emotionally and physically drained! And I'm crying as I type this...
I haven't smiled in over a month, my laugh is hollow if I laugh at all. I don't feel depressed but I think the poor weather, darkness and the fact of reality about my condition is affecting me, making me weak emotionally.
I'm isolating myself from friends, not because I don't want to hang out with them, but because I don't have the energy physically or emotionally to be around people IRL much. I only really socialize with my parents in person at the moment...
The meeting on Thursday is stressing me up a lot. Not just because of the time of day it's held, but because it's a very important meeting... I don't even want to talk about it more now, but will need to prepare a lot for it.
Overdid it yesterday... I knew it was coming...
I knew it! I was just doing too much yesterday and I sure am paying for it today by feeling more dead than alive and looking it too! I was planning to go out with my parents in the late morning but had to cancel and stay in bed, fell asleep again until a friend called me at 12:40pm and woke me up! I dare say my jaw nearly fell to the floor when I looked at the time!
Spent all day feeling physically drained, been laying on the sofa at parents place most of the day unless helping mum with her laptop or cooking dinner. Could have easily fallen asleep again in the early evening but somehow managed to stay awake.
I knew this was coming. It's always like this... I do something fun one day, and feel more dead than alive the next :(
Will try to rest as much as possible these coming few days, I have my aqua aerobics on Wednesday, a couple of meetings on Thursday out of which one is at 9am (I don't know where those people have their brain! Calling a chronically ill, insomniac to a meeting at bloody 9am!) and on Friday I'm going to see a hand specialist occupational therapist in the neighbor town to discuss my darn thumb and my wrists. My occupational therapist agreed a while ago that a ring splint for my left thumb MCP joint is probably the best, seeing a regular thumb brace prevents me from using my hand and my thumb is so bendy I can escape the brace, and the plastic bit and rough fabric in my current brace rubs my skin over the MCP joint, which causes discomfort so I don't wear the brace instead...
On Saturday, if I'm still alive by then, mum and I might take the train (and I've said I'd never take the train again after an experience in September) to Gothenburg to go to some shops near the central station, but we'll see about that one, I might sleep the weekend away after the hectic WTF of this coming week.
But if we do go to Gothenburg on Saturday, at least I will have my soft, hinged knee brace again by then, it's been at the hospital for adjustments to fit my left knee and make it easier to take on and off, since I got the rigid brace for my right knee. And of course, I'll have the darn crutches that loves to ruin my hands and arms... And if people don't mind their step and keep kicking on them in Gothenburg this time, I might just loose it and scream at someone to use their frikken eyes! My crutches are RED (the handles) and have bright neon yellow reflective stickers on them, it's impossible to NOT see them unless you're blind!
Might look into getting a pair of smartcrutches soon, even though I'd have to import them from abroad, at least they're more gentle to hands and arms and even okay for EDS'ers to use, more about those can be found on http://www.smartcrutch.com/ Though that being said, it still won't help at all when both legs are on strike... It will just hopefully make me less achy when I walk, and hopefully won't get tired too fast either. Regular forearm crutches like I'm using now are HELL for my hands and wrists!
On another note: I don't know how the TV stations around here can survive! There's absolutely NOTHING on TV on a Saturday evening!
Time to hit the hay pretty soon... I'm sleepy!
Saturday, October 20, 2012
First day as 27
The day started okay, I woke up when I planned to, snoozed for an hour and got up an hour later than I first had planned. Anyways, I did do what I planned to do, minus the nail polish, eyebrows and makeup (I just wasn't in the mood for it) and out I went for a visit at my favorite cafe.
Mum had "ordered" me to listen to a local radio station between 1pm and 3pm because she had requested a song for me on there, the song wasn't played unfortunately so it feels like I wasted a couple of hours listening to shite music when I really just wanted peace and quiet. My grandmother arrived by train at 1:40pm and because of me being stuck with the radio, dad had to go pick her up at the station.
I was the master chef of the day, cooking oven fried potatoes, pork outside fillet which is much nicer than the fillet, red wine gravy and asparagus for dinner, all on my own with no assistance in the kitchen at all. A friend came over while I was busy in the kitchen and we were chitchatting while I was cooking dinner and she got to try all the kinds of cakes and cookies I had baked earlier in the week and she then joined us for dinner. Dinner got top mark from everyone, my grandmother even said everything tasted better than at the restaurant we had lunch at when going to the book fair together the other week ;)
Began preparing the birthday cake after dinner and while I was decorating the cake our family friends arrived just before 5pm. Had coffe, cakes, cookies and birthday cake at around 6pm and everyone said everything tasted amazing!
Chitchatting and DVD watching on the sofa after coffee until it was time to drive my grandmother back to the station for her 8:17pm train, then back to parents place where dad and the family friends were still watching DVD's and we kept watching more DVD's and looking in photo albums and just talking. Our family friends stayed until 11pm and I got back home to my place shortly after 11:30 after a really nice but tiring and busy day!
Think I'll rest up tomorrow. I'm getting a really sore throat now anyways, might be catching yet another cold.
I'm absolutely shattered, but happy with the day!
Friday, October 19, 2012
A year older and my "new life"...
So I'm 27, or actually, I'm 27 in less than an hour as I was born at 2:40am on October 19th. Now you might wonder what I'm still doing awake at nearly 2am... Like I always say: I was born night owl! Just the time of day I was born says it all.
So, am I going to celebrate today? No, not really. My grandmother is coming and a couple of family friends are coming, and we'll all be at my parents place sipping coffee and enjoying the home made (by me) cookies and cakes I've baked this week despite being severely out of energy. Will power made me manage to make cinnamon swirls and cookies on Monday, a butter cream filled chocolate roll cake and more cookies on Tuesday and the cake part of my birthday cake, a cake with gingerbread spices and oat cookies earlier tonight, for the most part by me, but with a little help from mum from time to time.
When I wake up in the morning today I'll jump into the shower as soon as possible and fix my eyebrows a bit, they look like crap at the moment! Might put a layer of nail polish on my fingernails too. I might even bother about makeup today to at least try to hide how I feel on my own birthday and with having to be around people I don't see everyday.
I've barely been outside in the past few weeks, unless being at my parents place or having my weekly aqua aerobics or some medical appointment, and I also join my parents with the grocery shopping. Other than that, I'm hardly seen outside.
I had a cold a few weeks ago, and parts of it is apparently still lingering in me because it feels like I still haven't recovered from it. I'm constantly very fatigued and sleep more than usual which is typical me when my body is fighting something. Nose also feels swollen inside still so it happens I wake up unable to breathe through my nose in the morning. Might need a round of tablets for it, a medicine I've had once in the past when a cold lingered in my nose. The ENT I saw then had never seen a more swollen nose weeks after a cold and wondered how I could breathe through it at all.
I also finally got my diagnose 3 weeks ago now, ending an over 1.5 year long "fight", I was right about my body, and my doctor finally saw it. I do have Ehlers Danlos Syndrome! It's bittersweet to finally have it written on paper now. Sweet because I was right and there's now guidelines to follow and it feels safe to know it's there in case something happens. Should I need a surgery of any kind, there are some things to keep in mind on an EDS patient, need to be careful with breathing tubes, moving the patient and local anesthetics and sedatives might not work and suturing needs to be done different. Without the diagnose the doctors would think I'm normal and do everything like normal which might result in complications that could be avoided. So it feels safe to have it written, and I did "celebrate" on my diagnosis day that the long struggle for a diagnose was over.
At the same time, it's bitter: Fuck! I do indeed have a chronic, progressive condition that will do its best to kick my ass unless I kick EDS's ass first! I need to reconsider things and EDS is putting a few obstacles on the road that is my life, for example, for the past 6 or so weeks, I've had what I call "walk account", and that's mainly used up by getting around indoors, for longer distances I am depending on crutches because of a very painful hip, using crutches sure does limit what you can do as it's bulky and you have to carry almost everything in a backpack as the hands are busy using the crutches. I am proactive with my condition though, I wear my custom fitted knee brace when walking, I attend the warm water aqua aerobics weekly to get some gentle exercise with supervision, I take my painkillers and muscle relaxant if I feel I really need to, if it means I can do something that the pain would stop me from doing. Like on Monday, it took a fair bit of painkillers and muscle relaxant to bake those cinnamon swirls and cookies, but I did it! Without taking the painkillers I wouldn't have managed it at all. I do keep painkillers at a minimum when I can, but sometimes I have to pick between painkillers and feeling more alive for a few hours, or no painkillers and just resting in bed or on a sofa.
I'm currently in a painy period too. I'm considering discussing with my GP about going back onto patches to have a basal coverage around the clock, and thus needing less of my instant release medicine. I was on the patch last year and it worked amazingly well with no side effects. I think I need something working in the background now and I prefer a patch rather than having to take pills every 8-12 hours. I won't touch things like Amitriptyline or Pregabalin etc, it has more side effects than actual effects!
My GP is also referring me for a rehabilitation stay at the bigger hospital nearby, a 2-3 week admission where I'll have more aqua aerobics, get to talk more with occupational therapists and physiotherapists to hopefully feel better physically and learn how to better deal with my condition physically by doing things in a better way.
I am also discussing with my OT about getting a wheelchair. Not to become wheelchair BOUND, but to get part of my life back with again being able to be spontaneous with say a day out at the mall with family or friends or being able to attend something that would normally mean being on my legs all day or the possibility of uncomfortable seating.
If I had been having a wheelchair in May, the Mother's day lunch with my parents and grandmother would have been much more pleasant for me just to mention something. The chairs in the restaurant we went to were absolutely awful, I was in agony the whole time! Going back to the very same restaurant in November to celebrate Father's day and I'm dreading it already, knowing how uncomfortable I sit there. We don't want to go anywhere else though, the restaurant is very cozy and has excellent staff and food. But the chairs, OMG!
Mum and I went on a bus trip in September, to a huge shop, and I really looked forward to going, but at the same time I was absolutely terrified my legs wouldn't cope with the amount of walking, later in September I went to a book fair in Gothenburg and had people kicking on my crutches all the time in the convention center, along with having to stand in line to even get inside the place, and on my way home on the train, I ended up sitting in a hard staircase on the train because no one cared that a disabled person boarded the train! During all those times, a wheelchair would have spared me from a lot of pain and stress! And with a wheelchair I wouldn't need to rest for several days before going out for something fun.
Anyways, enough rambling already! I'm NOT going to let this shitty fucking condition ruin my life! I take it for what it is and fight in the ways I can!
It's 2:42am, I'm 27 years old plus a couple of minutes. Now I'd better catch some sleep so I don't look like a panda when the guests arrive in the afternoon!
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