Last Tuesday I woke up in such pain that I was almost in tears. Primarily in my knees I as good as doubled my pain killers but to no avail, this was the start of what I can only call 7 days of sheer frustration which had me search for every grain of strength I could muster.
Flare ups are part of the course with arthritis, unpredictable in there appearance, length of stay and how it affects. Mine was 99% in my knees and an increase in my fingers and ankles. For the duration I would have to brace myself for just standing up, it felt like I had a bunch of nerves in between my shin bone and thigh bone so when I stood they all shouted out, loudly. It would take many attempts to get up, to move meant my foot was dragging on the floor leaning all I could on my crutches. I never got to go further than 20/25 feet to the downstairs toilet, by the time I got there I'd reached the maximum pain level but I had to get back to the sofa. The settling down time for the increased pain was approx an hour but as other arthritis bearers know, getting comfortable is a dream, so using my pj's I'd had to relax the leg, hoist it where I wanted it, position it and hope it didn't send a searing pain. It was hit and miss. Big fat pillows to the rescue! ;)
During a flare up I can't stand anything on my skin or any weight anywhere near the pain area so heat packs never do me any good. Having a leather sofa offers me the 'touch relief' on my skin when I'd lean my leg/hand/foot on it so I'm sure you can imagine I was shifting all over it to get cool spots (it heats up after a couple of seconds). I'd have windows open for the breeze on my skin hiding under a fleece blanket for the rest of me (not to mention the kids and their fleeces!) I didn't have them open too long though, it wasn't fair on them but when I could I did and it helped. I also tried the ice packs. These work on my hands and feet cos they don't hurt so much with pressure but I just cant stand them anywhere else. The fluid in my knees got so bad my knees looked almost twice their usual size, limited movement to bend or straighten, this was very painful and assisted with shooting pain at the slightest movement and sometimes just randomly. I just had to grin and bear it the best I could. I'm not ashamed to admit that there were times it got so bad that I was in tears. I'm easy to cry when it comes to sappy things, lovely and touching things but not pain and/or hurt, I'm much more in control then but sheesh, this had me begging the devil in zero time. Sunday afternoon I'd reached my limit so I called the NHS helpline for some advcice, they got concerned and after a call back from a doctor (not my own) she said she's sending someone out as she was worried that the swelling was spreading so much up and down my leg (its all fluid). I was informed apologetically that it could take up to 6 hours. I accepted that, I understand and I knew I could hang on in there. 8 hours later, 12.35am the doctor turns up very apologetic. Im not one to get a strop on too easily so it was ok, I was just grateful she even bothered. By this time the pain had subsided and I'd got comfy with a bunch of pillows. She immediately showed concern at the amount of swelling and gave me codeine to add to my regular medication and offered advice on how to use them with and without paracetamol. I was happy with her advice and a stronger pain relief and I was extra happy that she was going to write to my GP to suggest he support me in getting to Weston General so I can continue my planned treatment. She was aghast that there was no support in helping me get there or from him. I dozed off an hour or so later feeling more relaxed, in less pain and more assured that it's not all in my head. Even us arthritis bearers fear we are over reacting, you know :)
I missed pottering around the house, crawling upstairs to potter around up there, relaxing in the bath with bubbles and a good book not to mention popping out (having my wheelchair if/when we went to a shop or two). My fatigue hit also which I'm grateful it came the same time as a flare up, having them work at different times is enough to make life so very boring! Lol I'm so grateful I have two very supportive and independent children at home and some good friends who would pop to the shop for me and keep me company.
Last Thursday I had a fall. That statements makes me sound and feel old! Hehe I went to the loo and tripped over some washing (the loo is in the utility room off the kitchen) and couldn't get up. Kirsten was away at her friends and my phone was on charge in the living room. The door bell range 3 times, my house phone rang and my mobile rang but I was totally unable to get to them or shout loud enough to be heard, in the end, 3 or so hours later the lady who delivers my fresh fruit and veg heard my yells as she put the box inside my front door. She was initially panicky but to be honest, I wasn't hurt, just uncomfortable and needed to move. Once I assured her it's ok she helped me to the sofa and reluctantly went on her way. Bless her, she did call me a couple of hours later to see if I'm ok. :) I was fine, it was just very frustrating and disturbing how much I relied on my daughter/having someone around. I so love my independence. The funny (as in humorous) thing is that Charley came downstairs, saw me and figured I was too tired to get to the sofa and chose to nap on the washing pile (I was so grateful for Kirsten's big fur blanket at that point) and went back to his room! Lol Seriously, I'd rather him think that than know the truth and worry.
Having spoken to my Rheumatologists assistant I was pleasantly informed that she would insist on my GP supporting their medical plan for me and administer a jab to enable me to get to Weston to finally have the x-ray and blood test needed to get on a more long term medication, Methotrexate. I've read some impressive things about this drug; where people with osteo and/or rheumatoid arthritis have been overcome with pain and disability then gone on to do marathons and continue with an active career. That's not to say they don't have flare ups or daily challenges, it means they are more able to be in control, push the ticket and do something. I have no plans for a marathon, I had zero chance before this saga anyway so I'm not under any illusion but it would be nice to have some more mobility, less pain and to just not stand out in public. Most of all it would be nice to do things that I can no longer do such as walk up the stairs in a few seconds!
I did achieve other things though, I started a book that was recommended to me by Stephen R Covey, making notes and highlights as I went along. I read 2 books of Horrid Henry with Charley, wrote up a whole new section in my business plan, kept a whole weeks worth of journaling up to date and had many giggles and belly laughs with the teen. We read scriptures, watched scripture cartoons, talked about them and shared in many prayers. My son often says 'Can I give you a prayer, Mom?' which always makes my heart melt. I sent emails that were long overdue and wrote a few tutorials (loved having my sons laptop to use though now I have mine back and my oldest son is fixing my pc). I chatted on Facebook and Twitter and researched recipes\foods suitable for arthritic systems. I read some favourite blogs I haven't seen in a while and I chatted with friends in the United States. Designed some items I want to create for the website and priced up some potential work. Had visitors from church, laughed a whole lot and got a little bit serious too. Had friends call in for a visit and calls from family near and far. When I view it in that context it was more of a good week than a bad.
Yesterday I woke up, attempted to get up and ::magic:: the pain was a whole lot less, walking wasn't half so painful and I managed to get to the loo and back before the pain level increased. This was seriously good news. I don't mind having arthritis so long as I can keep something of my life and myself going. I sat on my perching stool in the kitchen and attempted to make some egg sandwiches for lunch but I'd totally miscalculated the fat spatter (even from flora cooking butter) can get you even from arms length away so Kirsten sent me back to the sofa. I'm beginning to have an issue with the sofa and I swear my bottom is growing :(( Lol
I think the hardest part through last weeks flare up was the pain I couldn't control, the sleep that came and went, lasted from five minutes to 5 hours then came the utterly useless feeling. The part I loved though was the decision to home school Charley till I move on to Methatrexate and have more mobility and spend lots of time cuddling on the sofa reading, discussing them and guiding him to write summaries (part of the English class). Having Charley be so demonstrative about something he's so passionate about or interested in makes for good entertainment, his humour is brilliant and never fails to make momma happy :))
Today is the start of a little more mobility, more schooling and getting back to some work that is over due. Thankfully I don't need my legs for all of that!
What are flare ups like for you? What is the worst/best part of them that you deal with?
Debs
Flare ups are part of the course with arthritis, unpredictable in there appearance, length of stay and how it affects. Mine was 99% in my knees and an increase in my fingers and ankles. For the duration I would have to brace myself for just standing up, it felt like I had a bunch of nerves in between my shin bone and thigh bone so when I stood they all shouted out, loudly. It would take many attempts to get up, to move meant my foot was dragging on the floor leaning all I could on my crutches. I never got to go further than 20/25 feet to the downstairs toilet, by the time I got there I'd reached the maximum pain level but I had to get back to the sofa. The settling down time for the increased pain was approx an hour but as other arthritis bearers know, getting comfortable is a dream, so using my pj's I'd had to relax the leg, hoist it where I wanted it, position it and hope it didn't send a searing pain. It was hit and miss. Big fat pillows to the rescue! ;)
During a flare up I can't stand anything on my skin or any weight anywhere near the pain area so heat packs never do me any good. Having a leather sofa offers me the 'touch relief' on my skin when I'd lean my leg/hand/foot on it so I'm sure you can imagine I was shifting all over it to get cool spots (it heats up after a couple of seconds). I'd have windows open for the breeze on my skin hiding under a fleece blanket for the rest of me (not to mention the kids and their fleeces!) I didn't have them open too long though, it wasn't fair on them but when I could I did and it helped. I also tried the ice packs. These work on my hands and feet cos they don't hurt so much with pressure but I just cant stand them anywhere else. The fluid in my knees got so bad my knees looked almost twice their usual size, limited movement to bend or straighten, this was very painful and assisted with shooting pain at the slightest movement and sometimes just randomly. I just had to grin and bear it the best I could. I'm not ashamed to admit that there were times it got so bad that I was in tears. I'm easy to cry when it comes to sappy things, lovely and touching things but not pain and/or hurt, I'm much more in control then but sheesh, this had me begging the devil in zero time. Sunday afternoon I'd reached my limit so I called the NHS helpline for some advcice, they got concerned and after a call back from a doctor (not my own) she said she's sending someone out as she was worried that the swelling was spreading so much up and down my leg (its all fluid). I was informed apologetically that it could take up to 6 hours. I accepted that, I understand and I knew I could hang on in there. 8 hours later, 12.35am the doctor turns up very apologetic. Im not one to get a strop on too easily so it was ok, I was just grateful she even bothered. By this time the pain had subsided and I'd got comfy with a bunch of pillows. She immediately showed concern at the amount of swelling and gave me codeine to add to my regular medication and offered advice on how to use them with and without paracetamol. I was happy with her advice and a stronger pain relief and I was extra happy that she was going to write to my GP to suggest he support me in getting to Weston General so I can continue my planned treatment. She was aghast that there was no support in helping me get there or from him. I dozed off an hour or so later feeling more relaxed, in less pain and more assured that it's not all in my head. Even us arthritis bearers fear we are over reacting, you know :)
 |
| Photo taken from Healthmonitor.com |
I missed pottering around the house, crawling upstairs to potter around up there, relaxing in the bath with bubbles and a good book not to mention popping out (having my wheelchair if/when we went to a shop or two). My fatigue hit also which I'm grateful it came the same time as a flare up, having them work at different times is enough to make life so very boring! Lol I'm so grateful I have two very supportive and independent children at home and some good friends who would pop to the shop for me and keep me company.
Last Thursday I had a fall. That statements makes me sound and feel old! Hehe I went to the loo and tripped over some washing (the loo is in the utility room off the kitchen) and couldn't get up. Kirsten was away at her friends and my phone was on charge in the living room. The door bell range 3 times, my house phone rang and my mobile rang but I was totally unable to get to them or shout loud enough to be heard, in the end, 3 or so hours later the lady who delivers my fresh fruit and veg heard my yells as she put the box inside my front door. She was initially panicky but to be honest, I wasn't hurt, just uncomfortable and needed to move. Once I assured her it's ok she helped me to the sofa and reluctantly went on her way. Bless her, she did call me a couple of hours later to see if I'm ok. :) I was fine, it was just very frustrating and disturbing how much I relied on my daughter/having someone around. I so love my independence. The funny (as in humorous) thing is that Charley came downstairs, saw me and figured I was too tired to get to the sofa and chose to nap on the washing pile (I was so grateful for Kirsten's big fur blanket at that point) and went back to his room! Lol Seriously, I'd rather him think that than know the truth and worry.
Having spoken to my Rheumatologists assistant I was pleasantly informed that she would insist on my GP supporting their medical plan for me and administer a jab to enable me to get to Weston to finally have the x-ray and blood test needed to get on a more long term medication, Methotrexate. I've read some impressive things about this drug; where people with osteo and/or rheumatoid arthritis have been overcome with pain and disability then gone on to do marathons and continue with an active career. That's not to say they don't have flare ups or daily challenges, it means they are more able to be in control, push the ticket and do something. I have no plans for a marathon, I had zero chance before this saga anyway so I'm not under any illusion but it would be nice to have some more mobility, less pain and to just not stand out in public. Most of all it would be nice to do things that I can no longer do such as walk up the stairs in a few seconds!
I did achieve other things though, I started a book that was recommended to me by Stephen R Covey, making notes and highlights as I went along. I read 2 books of Horrid Henry with Charley, wrote up a whole new section in my business plan, kept a whole weeks worth of journaling up to date and had many giggles and belly laughs with the teen. We read scriptures, watched scripture cartoons, talked about them and shared in many prayers. My son often says 'Can I give you a prayer, Mom?' which always makes my heart melt. I sent emails that were long overdue and wrote a few tutorials (loved having my sons laptop to use though now I have mine back and my oldest son is fixing my pc). I chatted on Facebook and Twitter and researched recipes\foods suitable for arthritic systems. I read some favourite blogs I haven't seen in a while and I chatted with friends in the United States. Designed some items I want to create for the website and priced up some potential work. Had visitors from church, laughed a whole lot and got a little bit serious too. Had friends call in for a visit and calls from family near and far. When I view it in that context it was more of a good week than a bad.
Yesterday I woke up, attempted to get up and ::magic:: the pain was a whole lot less, walking wasn't half so painful and I managed to get to the loo and back before the pain level increased. This was seriously good news. I don't mind having arthritis so long as I can keep something of my life and myself going. I sat on my perching stool in the kitchen and attempted to make some egg sandwiches for lunch but I'd totally miscalculated the fat spatter (even from flora cooking butter) can get you even from arms length away so Kirsten sent me back to the sofa. I'm beginning to have an issue with the sofa and I swear my bottom is growing :(( Lol
I think the hardest part through last weeks flare up was the pain I couldn't control, the sleep that came and went, lasted from five minutes to 5 hours then came the utterly useless feeling. The part I loved though was the decision to home school Charley till I move on to Methatrexate and have more mobility and spend lots of time cuddling on the sofa reading, discussing them and guiding him to write summaries (part of the English class). Having Charley be so demonstrative about something he's so passionate about or interested in makes for good entertainment, his humour is brilliant and never fails to make momma happy :))
Today is the start of a little more mobility, more schooling and getting back to some work that is over due. Thankfully I don't need my legs for all of that!
What are flare ups like for you? What is the worst/best part of them that you deal with?
Debs
No comments:
Post a Comment