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

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

Short breaks from pain – a new drug

To say I respect and try to avoid the use of drugs is an understatement. I’ve got a sleeping aid prescribed in 2001 that I still haven’t finished. I only take it when things are so bad I’m crying for lack of sleep. I save it, I cherish it because it works when nothing else does. It’s Imovane (Zopiclone) and half a 7.5 mg tablet ill put me into Neverland in 20 minutes no matter what’s going on in my life.
When a new acquaintance told me about a medication she was taking for pain she has from a terrible car accident resulting in many broken bones and operations following it, my ears pricked up. She liked it and said it really helped.
It’s called Targin and when I asked my GP about it, he’d never heard of it. So, he called the pharmacist downstairs from his office and got clued in. Turns out it’s a combination of two active ingredients: oxycodone and naloxone. Oxycodone belongs to the group of medications known as opioid analgesics (narcotic pain relievers). It decreases pain by working on the central nervous system. Naloxone belongs to a group of medications known as opiate antagonists and is used to lessen the constipation caused by oxycodone. This combination is used to treat moderate to severe pain in adults who require round the clock pain relief for several days or more. Hey, it’s been 20 some years.
And, you’re supposed to take it every 12 hours. I can’t do this because it really flattens me physically and dulls my spirit. But, for about 12 hours, it gives me a nice warm buzz and I get a short vacation from most of my neck, shoulder, rib and back muscle pain and about 50% reduction of the burning nerve pain across my buttocks and down the backs of both legs.

Pain - Fire burns in my skin/ Day and night/ No respite/ The red coals burn into my soul/ Why do I have to live this way?


It takes 12 more hours to wear off for me, so I can’t take it if I’m going to drive the next day or do anything that takes concentration or is really difficult. I simply can’t think too well when using it. I make mistakes and have to concentrate extra hard to make sure I don’t mess up transferring or doing something physical.
So far it hasn’t made me constipated but I’ve taken two stool softeners every night for years and now Metamucil every day to keep my aging CMT intestines moving along. The stool softeners were prescribed by my terrific lady gynecologist. She has patients who are pregnant and use a wheelchair. When you don’t walk it’s difficult to stay regular. When you are pregnant, constipation can be part of it all. Stool softeners make sense for aging CMT people like me who can’t walk and are often constipated.
For about 12 hours after the twelve hours I was in my buzz, I have profuse sweating, a dull headache and my pain is back. I can work but not well. After that period, I’m back to normal and so is my pain. So, it’s a tossup, really. I get 12 hours of relatively pain free time to luxuriate in my warm glow and then 12 or more hours of withdrawal when it’s wearing off.
The good thing about it is that it’s something I can take when the pain has me worn down to a nub and I want to screw myself up into the heavens and leave my earthly bones behind. The bad thing is that I pay for those 12 hours of bliss with another 12 hours of sweaty grogginess and my pain is back. Are those 12 good hours worth it? Sometimes.
I’ve not given up exploring relief for pain. I sent away for my license to possess medical cannabis in September. I got it Dec. 2. I’m never going to smoke it but I am going to see if I can find a strain that will give me that warm pain-free buzz without the withdrawal symptoms. And, it’s not cheap but is still less expensive than the $100 to fill the Targin script and will likely last longer because I can work out myself how much I can take at any one time so I don’t get so groggy.
Cannabis had been vilified unjustly, I think. The “war on drugs” has tarred everything with one brush including some natural plants that can truly help people with a variety of medical concerns. If it helps anyone in pain, it’s a good thing in my books. As far as it being a gateway drug; it’s easier to get opoids than it is marjuana…from a doctor.
I respect my general practitioner. He has a tough job and no one can know everything. He will gladly prescribe addictive narcotics for me but when asked if he would sign for my marihuana possession license he said he wasn’t comfortable with that. Does that make sense? I guess then he’s comfortable with me being in pain, addicted and experiencing withdrawal trying to get even 12 hours of relief living on narcotics. To date, medical science hasn’t done such a good job as far as my pain is concerned. Let’s see what Mother Nature can do.
Stay tuned. My marijuana cookies and butter is on its way.

Thoughts on coping with CMT pain

Last Saturday I went to a chronic pain support group meeting that was more a they- tell-us than a we-tell-them but it served its purpose.

I didn’t stay for the entire meeting because it began an hour late and the room was freezing cold for me. I soon lose vitality in a cold room and I could feel myself beginning to wane into the second hour. I was so cold, I just wanted to curl up in ball and go to sleep.

Dr. J. Henry, Ph.D., a pain research scientist from McMaster University in Hamilton, ON, and his wife, Dr. Kiran Yashpal, are the leading people in chronic pain support in our area. They help form and speak at support groups and they are in touch with everything going on re chronic pain. Thank God for this wonderful couple. No matter how well we cope, we all need hope, and they bring it.

To tell you that I have had neuropathic pain for 20 years doesn’t help you but it might explain why I’m so interested in CMT pain. I feel as though I am sitting in a pile of hot steel wool every day, almost all day. My bed sheets feel like sand and I burn where my clothing touches my behind and the backs of both legs to the knee. My right side is the worst. I use cold packs under my right thigh to dull the worst pain. Other than that nothing works or alleviates the pain. No painkiller, nothing…and I’ve tried more than 30 including ingested marijuana, Sativex, Lyrica, Cymbalta, a nerve block, you name it.

Dr. Henry gave us a list of dos. Most of us may know them but we also know that all of us are in different places with our pain.

Own your pain. It took me a few years to realize that my pain was MY pain. It wasn’t something someone else had to fix. I had to learn to live with it. It was mine. No one could see it. No one else could feel it. It lives with me every day like a mean little cousin I hate. Funny though, when it does go away, and that’s rare, I actually search the corners of mind to see where it went. Then, I celebrate the wonderful gift of a few minutes, hours or days without pain. Once you take ownership of your pain, you stop blaming everyone, you stop expecting someone to “fix” it and settle down to work living with it. No one says you have to stop searching for pain relief but you no longer feel the anguish you do when you think it’s someone else’s responsibility. There’s a certain peace and calm when you make it your own.

Dr. Henry also stressed that people in chronic pain need to get the right information – I’ll add…we with CMT need to find the right information about CMT so we can make informed decisions about a great many things including having family, what type of schooling and kind of work we do, etc. If we know our CMT well, we know what causes us pain. Because we are all different and our pain differs, what causes me pain may not be painful to you BUT if you know what causes your pain, you can avoid it.

Chocolate, tea, coffee, any stimulant, causes me pain. Cold doesn’t help. Stress and anxiety also causes me pain. I can have a nightmare and wake up with the pain surging when I went to sleep almost pain free. I can wake up feeling pretty comfortable, start thinking about something that makes me anxious that I have to do that day and the pain creeps back like a 7 out of 10 carpet of fire. Switch sides of my brain and begin planning a painting and it goes back down to a 2 or 3. Knowing that stress and anxiety causes me pain, I try to avoid it. That’s not easy and that brings me to pacing yourself. This is one of the most difficult things anyone can take on. We are driven or we wouldn’t be doing what we do in spite of our disease. People who are driven rarely pace themselves. They go at things full tilt and love the challenge…deadlines and all.

I don’t pace myself unless I have to. But my body tells me when I have to. It literally scares the SH out of me. I lost the use of my right hand driving. I know why it happened. My hand formed in the shape of the quad grip on my steering wheel. I can drive but I can’t open my hand to do other things. Thank God I’m left-handed.

Many years ago, I lost the use of my fingers typing. For years I used little pencils to make the big middle ones stiff so I could hit the keys with two fingers. Then they wouldn’t stiffen. Time to make an adjustment. I now type with the knuckles of my little fingers moving my arms from the shoulder. It likely looks like I’m playing the carillon keyboard that makes the bells in the cemetery ring.

Pacing myself means I don’t paint using my hands and wrists and then do an entry for this blog or write an article the same day. I have to let things rest and hope that they recover when I give them time. No time…no recovery … and permanent paralysis over time.

We also need information about what type of CMT we have, what we can expect, what we can do for it, what we can do for our pain and what is being done in the world of pain research. Unfortunately, most general practitioners know nothing about CMT. Find an MDA clinic or visit Dr. Michael Shy at Wayne State in Detroit, MI. or Dr. Greg Carter in Seattle, WA. Dr. Steven Baker at McMaster in Hamilton, ON runs a CMT clinic.
Slowly, slowly, we all do our homework. We eventually internalize that fact that, yes, we have CMT. It is incurable. That’s a fact of life for us and we’re going to be taken on an interesting journey because of it.

We may join a support group or log onto an internet chat line and we discuss it with family if they’ll listen. But for the grace of genetics, you ended up with CMT and they didn’t. It’s no one’s fault. It happened. As Dr. Henry says, “Dance with those who hear the music.” If people don’t understand or don’t want to understand, don’t waste your time and energy on them. There will be those who do and they are the ones with whom you can discuss your CMT and CMT pain. We also need to talk to our doctors. The hard part to that is, as I mentioned above, most general practitioners know nothing about CMT and some even go by the old tune that there can be no pain associated with CMT. Pain is secondary to CMT and in most cases caused by something CMT brings about. In my case the pain is caused by degeneration of nerves in the spine.

Trying to find information on CMT and pain is not easy. Dr. Greg Carter in Seattle firmly believes that cannabinoids are the answer, or one of them. My GP won’t even discuss it. I had to go another route and someday I’ll tell you about my journey into growing pot. For now I’ll just say it doesn’t help me.

Another on Dr. Henry’s list was quality of life. We have to try to maintain a certain positive quality of life – pain or no pain- and that isn’t easy. However, after you get over your, “How can I possibly live with this?” period and realize that you will live with it and you’re going to have to cope – you begin to start thinking of how you are going to build a life around your pain.

To cope I don’t do mornings. They are my time to get myself in gear, do what needs to be done to my person and just breathe. I do afternoons for meetings, etc. If the meeting is at night, too bad, unless it’s something I really want to do and then I plan ahead, get extra rest, and don’t plan anything for the next day so I can recover. I also have to dehydrate myself because I can’t get up off a regular height toilet. That leaves me unable to use a public bathroom when I’m out somewhere. Being dehydrated much of the time leads to constipation, stomach upset and a whole host of other problems…even dry lips and eyes. So, when I am home, I drink like crazy, and it helps. My at home toilet is set up with a Versa frame so I can lift myself off with my arms. I’m a pro at hitting the seat in two seconds flat after I get my slacks zipper undone and the slacks down. That takes longer because my hands are so weak.

I sit on cold packs at meetings and try to keep warm by always having a large light shawl in my scooter basket. My hands get tucked under my armpits. My feet freeze. I don’t go a lot of places where I have to sit for a long time with my legs down. I’ll leave a meeting before it’s over if I’m getting worn out.

Exercise helps build the endorphins in my brain against pain. Hubby, Ron, and I work out three times a week doing resistance exercises together. They keep my right shoulder away from the surgeon and my back hurts less when I’m at the computer if I exercise regularly.

I try to laugh. America’s Funniest Home Videos break me up especially the dog parts and a good fart joke makes me dissolve in laughter. Must be my old English background…all that pub humour.

I don’t do much guest speaking anymore because it stresses me out too much. When I know I have a guest speaking engagement coming up I also know I’m in for weeks or months of extra pain.  As soon as I wake up in the morning and think about it, the pain caused by anxiety comes flooding in and it stays there all day. Accepting a guest speaking engagement is like accepting painful punishment. I’m fine once I’m on stage, it’s the anxious days and weeks leading up to it that do me in.

I also don’t put up with people who sap my energy any longer. Recently, I excused myself from a conversation because the man kept telling me the medical profession was out to kill him and had been for years. I can’t help what he thinks but I do care what he does to me while he’s acting out his tirade. Maybe it’s part of maturing but I no longer feel bad when I save myself from someone who is verbally abusing me, whether they know it or not.

There is more to Dr. Henry’s list and someday soon I’ll talk more about CMT pain but I’d love to hear from any of you who are in pain. Share your CMT pain through the comment box on this blog and we can all learn.

Daily thoughts

Some things flit through my mind and others stick…sometimes for days..sometimes forever.

Last night I watched a movie called A Short Stay in Switzerland starring Julie Walters as a physician suffering, and I mean suffering, from a disease that was eventually going to see her unable to speak, swallow, feed herself, walk and, in general, function.  Her husband had died of the same thing and she knew full well what was ahead.  She decided to leave England and travel to Switzerland where she could end her life without being labeled a criminal. Her three children were told and supported her although it wasn’t easy being told by your mother that she wanted to die. They went with her to Switzerland and it was heartbreaking to see what they went through. She did the deed and it was over.

The emotional relief I felt when she was finally at rest, when her jaw dropped and you knew it was over, was just incredible for me.  I’ve long thought about this and often wondered if I’d have the intestinal fortitude to kill myself if I got to the point where my CMT life simply wasn’t worth living. And worst of all, if I had a life full of constant pain that couldn’t be relieved without being in a drugged haze. The pain I have had for the last 20 years is bad enough.  I can’t imagine it worse but then I couldn’t imagine back then living with what I have already lived with for so long. The human spirit is an amazing thing.

I think the most difficult part of the movie was when she was saying goodbye to Flora, her beautiful cat.  That just did me in.  Animals don’t understand that you are going away for good. They just love. People understand and they love. Perhaps it was because my 15-year-old deaf/blind poodle was lying on a foot stool under the television that I felt so emotional about this scene. I know his days are numbered.

It takes tremendous courage to kill yourself, it takes tremendous courage to live on with the stresses of progressive deterioration. Either way, I think it should be our choice unfetted by laws or politics. We need to know we have the option of ending it when it simply becomes too much for an intelligent, brave, optimistic soul to go on.

If you get a chance to see the movie, don’t pass it up.

Speaking of stress, I had an e-mail yesterday from someone with CMT whose family is under a great deal of stress due to a conflict with a neighbor. He was asking if stress can make your CMT worse and have there been any research articles printed on it.  I’ve been out of the CMT research loop for about eight years. But, he can search Medline for journal articles and any good university library can get them for him.

When I was in the loop and publishing the CMT Newsletter the question of stress came up often.  We who have CMT know that stress can really do a number on our body.  It only makes sense that if we have a compromised nervous system anything that unduly stresses that system will see a decrease in our ability to function.

When I asked the physicians who worked with me about stress they could only say that because they couldn’t, or didn’t have the opportunity to, measure the person’s level of function before the stressor, they couldn’t say definitively that the stress had made them worse.  I think they were being asked because someone was proposing a lawsuit. We know if we’re being affected by the stressors around us. Trying to prove it is something else.

I remember a young woman with CMT who went blind after an automobile accident and from what everyone could figure out, it was from the stress. A seemingly simple fall resulting from catching your toe on a crack in a cement sidewalk can see you truly stressed for days. It changes your entire body composure, your homeostasis. That’s why we can easily fall again… everything is out of whack from the first fall.

Fighting with a neighbor is one of those situations that makes you feel helpless. It concerns your home: the place you are supposed to be able to retreat to for rest and healing. Unfortunately, the person you are fighting with is there, in the house next door, day after day. The problem needs to be resolved. The continual stress can be devastating.

I painted outside for three hours today. During those three hours I didn’t feel the heat, had very little pain and only looked at my watch when I heard the school bus pull up next door to left my neighbour’s daughter out at her driveway.  It was some kind of heaven: water splashing over the rocks in the pond, the boat-tailed grackles gnawing and crackling in the cedars, the seeds from my Shademaster locust dropping like heavy flies on my drawing table. The bright colored pigments dropping off my brush give me more than food. Watching the pigment disperse over the water-laden paper is like watching feathers grow. The entire process lights up my brain and makes me feel alive.  I have to paint more.

I promise I’ll make these shorter.   It’s easy to go long; tough to be succinct. I have to get tougher on myself for your sake.  Thanks for being there.

Shutting the door

It doesn’t happen often but sometimes my husband and I have to be in two different places at the same time.  We have one van. Today, I had to be at the hairdressers at 11 a.m. He had to be in Welland to have the van looked at at 10 a.m.

The weather is nice so I suggested I take my scooter over to the plaza which is only three blocks away.  I’m so used to him being here and doing what needs to be done, it was a study in logistics to get me together before he went.  Could I open the door myself with my very weak hands to get out? Could I work the key and turn it in the lock?  Could I transfer without a transfer board to my outdoor scooter?  Getting onto the board is easy but pulling it out from under yourself while you’re sitting on it is something else. Could I handle everything without dropping anything and not being able to retrieve it?  Could I shut the door? It’s tricky trying to hold onto a door handle and back up in a scooter at the same time to pull it shut.

We did a trial run.  I recalled a visit I made to an independent living facility in Columbus, Ohio some years back and they had ropes from the door lever handles to the other side of the door.  You could reach out and grab the rope end by the door hinges, give it a tug and the door would come closer to you.  As the door closed, you could actually pull it shut with the rope and then, when it was within reach, grab the handle.  Our door is metal so putting a screw-eye in it to take the rope wasn’t an option but tying a legth of rope to the handle worked like a charm.  I also tied a loop of twine to the door keys and put it around my wrist so I wouldn’t drop it trying to lock the door.

Transferring to the outdoor scooter without the transfer board was easy as long as I left enough room between the scooters for my feet to swivel. I can stand but I can’t walk. It went like this: Position outdoor scooter with key out and seat turned facing indoor scooter. Pull indoor scooter up beside outdoor scooter so seats are level with each other.  Leave about a foot between scooters. Pull out key on indoor scooter so it won’t move. Swivel indoor scooter seat to face outdoor scooter seat. Stand up, turn around, sit down on outdoor scooter. Swivel seat on outdoor scooter to face front, push in key and drive over to indoor scooter. Take key off indoor scooter so no one will take it. Anyone who can walk has no idea how much maneuvering it takes to be on one of these things.  How lucky you are to be able to walk out the door, lock it and walk away.

The trip to the plaza was uneventful although the expansion joints in the sidewalks played havoc on my neck and spine. I know why people ride their scooters on the road.  It hurts to ride on the sidewalk.

My hairdresser colors and cuts my hair while I’m sitting in my scooter. I sit on an extra cushion to raise me to sink height while she washes it. I shopped at the plaza, had a certificate framed and had lunch before riding home.

I think it’s important for me to realize just how much I really do rely on my husband to look after things but nice to know that with a bit of planning, I can still be independent.