Pain and peace

Four weeks ago I was in utter despair. My pain drug, clonezapam, was no longer working and my pain level was up to an 8/10. I didn’t know where to turn. My doctor at the pain clinic had told me to go to my general practitioner to renew my prescription but I couldn’t figure out what I was going to do because it was no longer working and I had been handed over to my GP who referred me to the pain cliic in the first place. I was going in circles and in real pain.
My husband and I made an appointment to see my GP and the first thing he did was tell me that I shouldn’t be on clonazepam but I should be on Lyrica. I had tried Lyrica many years ago and had gone into a shock state where I was cold and clammy and felt just terrible. I didn’t think it was for me but I was willing to try anything.

pink hyacinths

pink hyacinths

The first night I took the Lyrica, I slept like the dead. Ten hours after I had taken the pill I still could barely move but I actually felt as if my body was relaxed. Muscles in my shoulders, my back and rib cage didn’t hurt. Lyrica was maybe going to work wonders for me! But, as most things work out, during that day the neuropathic burning pain came back and I couldn’t shake the drowsiness of the Lyrica. It seemed as if the Lyrica lasted 12 hours, and relaxed me for that length of time, then took another 12 hours to wear off so I could actually think straight and didn’t help the burning pain.
I knew my GP didn’t want to prescribe clonazepam and had told me that he would not prescribe marijuana when I asked him. So the next step was to make an appointment to go to back to the pain clinic in Hamilton and talk to my original team. I was pleasantly surprised when they said they could take me in two days time.
Ron and I made the two-hour trip to Hamilton (Ron likes to take the back roads) and Dr A.J. told me that I should be taking the clonazepam along with the Lyrica. “Two completely different drugs,” he said. Lyrica will help with my fibromyalgia pain and the clonazepam will dull my brain enough to cope with the burning neuropathic pain. I had been previously afraid to take the two of them together because I didn’t know how they would interact with each other since they both made me drowsy. I really don’t want to unknowingly overdose on prescription drugs.

My yellow roses

My yellow roses

The first night, I took two clonazepam and one Lyrica. I couldn’t get out of bed until 2 o’clock the next afternoon. I was completely out of it, but the pain was around 3/10. The next night, I took one clonazepam and one Lyrica, and realised that I had to take the drugs early. The clonazepam acts quite quickly but the Lyrica takes about an hour and a half to start working for me. So I’ve sort of changed my life around to accommodate my drugs. I go to bed around 9 o’clock; sometimes with a good book on my Kobo and sometimes watching taped TV shows, and I take my drugs early so that I’m conscious and can think by 9 or 10 o’clock in the morning. The Lyrica has pleasantly surprised me by continuing to take away that horrible back pain I used to have when I sat at my computer and it also does away with the cramping in the muscles around my ribs, pain in my shoulders and a lot of other incidental aches and pains that I have always contributed to just plain overwork but was probably fibromyalgia that I ignored from a diagnosis about 25 years ago. It’s so easy to simply ignore something when you think nothing can be done for it. I had no idea that Lyrica could do that. Feeling that I’m really in bed and not suspended on top of the mattress is a real joy. And, a huge bonus with taking Lyrica and clonazepam together is that I rarely have to get up in the middle of the night to go to the bathroom, in fact I don’t think I’ve done it more than once in the last 3 weeks, and that really helps contribute to my quality of sleep.
I hate to be talking about pain and drugs all the time but after all this blog is about CMT and me.
On a lighter note, spring has sprung hear in Niagara and it’s absolutely gorgeous out there with temperatures in the high 60s to mid 70s.

Eva Schmitz of Palatine Roses selecting rose bushes for me in the spring rain

Eva Schmitz of Palatine Roses selecting rose bushes for me in the spring rain

My sister, Kathie, and I took a trip in the rain out to a place called Palatine Roses in Niagara-on-the-Lake two weeks ago and I’ve never seen so many roses, or rather rose bushes, in one place. I bought 15 – 6 miniatures and 9 tea roses – all in various shades of pink, yellow and white. I love the ones with the cream and green on them. For my 71st birthday which was 16 April, my sister and my husband paid for my new roses. Thanks to both. You are terrific.

Harold uses a huge bulldozer to pick our 700 plus pound piece of granite out of the pile

Harold uses a huge bulldozer to pick our 700 plus pound piece of granite out of the pile

We’re having some landscaping done and hubby and I went to Montgomery Landscaping in Niagara Falls which is also a rock yard. I’ve never seen so many different types and sizes of rock in my life. The man who runs the yard, Harold, used a huge bulldozer to pick out a piece of granite I liked, weighed more than 700 pounds, that we are going to have drilled and made into a bubbling rock so the birds can take a bath and drink out of the top and small animals can drink at the base as it falls down into a hollowed out piece of stone at the bottom.
Our back garden is my place of peace, my safe haven, and I intend to be out there most of the summer. I have my Kobo reader and I have an old adjustable single bed out there. I’ll have a nice new slippery cover made for it so that I can transfer sideways onto it from my scooter, cover up with the mohair blanket, if needed be, and read while I’m surrounded by birds, chipmunks, squirrels, roses and rhododendrons.

Dogwood

Dogwood

And, were buying another dogwood tree this week. I think they are my favourite flowering tree and they grow so well here in Niagara because we are part of the Carolinian Forest zone of Canada and the United States. A lot of things will grow here that won’t grow elsewhere in Canada or the United States including beautiful dogwoods in a variety of colours.
I’ll write more as the landscaping takes off mid-May. I find it fascinating to watch the ground being moulded into something that accommodates my scooter and me plus makes my world a more beautiful place.
I’m no longer desperate from the pain but it sure wasn’t fun not knowing how things would turn out.
One thing you can never do is let go of hope. When all things look bleak and dark, hope is the one thing that can keep you going and that’s what I hung onto while I was desperately searching for ways to dull the pain that I know is always lurking under the surface of the drugs. I’m not deceiving myself that I have a long term answer but for now, I’ll take what I can get, and keep on chugging along.
Till next time, take care,
Linda

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Staying positive and having something to look forward to

I like my posts to be positive and sometimes it isn’t easy to be up beat. That’s why my entries are so irregular.
These are some of the good things that happened during 2012:
I’ve gotten my pain to a manageable level using a nightly low dose of clonazapam.
Ron and I figured out how I can transfer sideways onto the toilet and into the shower without me standing.
I have taught myself Dragon Dictate. Each time I use it, I get a little better at it. For more than 50 years I have written articles using my fingers. My thoughts flow from my brain to my fingers onto the screen easily but not so easily from my brain immediately to my mouth to the screen.
With my pain level low, I had the energy to ask a circle of my friends if they would help me renovate my office. My husband, four wonderful women, and two men friends (one a carpenter I’ve known for 20 years) stepped up. In about three weeks I had an office that I can actually turn my scooter around in without making a three-point manoeuver. They sorted piles of paper, sanded and painted 30 shelves, hauled boxes of stuff, I had at one time thought I couldn’t live without, to the local recycler, painted walls and installed the shelves for my files so that I can pull them out sideways as my hands are too weak to lift and I have no grip. This means I can find things and it makes putting away much easier. My work areas now stay uncluttered.
shelves
One of the things I love the most about the new office is a wide shelf under a long window. Right now it has seven big plants on it including four orchids getting ready to bloom. I guess you’d say orchids are my passion.
orchidwindow
A strange/good thing happened to me just as I was renovating the office. I had to find a new home for 400 Architectural Digests. I put them on a website called freecycle and a man who lives only three blocks from the us asked for them. The minute we met, we clicked, and have since become friends. He knows more about plants than I’ll ever know. Two weeks ago we visited a local greenhouse and rescued five phaleanopsis orchids that were in spike but not in bloom. Most people like to buy their orchids in bloom. I delight in not knowing what the colour will be and the surprise of seeing an orchid slowly unfold it’s gorgeous petals when it’s ready. I’ll take my chances with these five and they, plus my other 20, will see me through January, February, March and April with an office and bedroom full of beautiful surprises and colour.
I continue to try and make the new nature Centre Heartland Forest as accessible as possible and have met a lot of wonderful dedicated people through this project. If you’re interested in learning more about it go to HeartlandForest.org.

 

Heartland Forest Nature Centre on Dec. 2. The roof has now been completed.

Heartland Forest Nature Centre on Dec. 2. The roof has now been completed.

My newspaper column continues and I enjoy reaching out to the public while realizing what a privilege it is to be able to regularly state my position on a variety of topics concerning disability issues.
My husband and I are having our back garden done over as it’s been 23 years since anything was done out there and it’s a bit overgrown. I have plans for a bubbling rock, a beautiful flowering viburnum tree (after two trees are cut down) and some interlocking brickwork to extend the patio out so that I can have more than one person at a time visit me.
Whether it’s just a bunch of daffodils or an entirely new backyard, I like having something to look forward to during the long winter months when I rarely go out because the cold just does me in. Planning a spruced up backyard is certainly enough to keep me going for a couple of months.
And, before I forget, I entered my seven barrel salad garden I told you about in a blooming balcony competition and won a huge book listing just about every plant you can think of. Before I cracked it open I loaned it to my new garden friend so I’m looking forward to going through it during the winter as well, however, it was kind of neat to have our efforts to make an accessible garden acknowledged.
To all of you who have tuned into my blog during 2012, I wish a very Merry Christmas or whatever your holiday might be. But I think when you have CMT the most important wish should be that our condition not worsen and that we approach every day with the thought that we are going to do the very best we can with what we have left.
All the best to all of you in 2013.
Linda
sunsetphal