Saturday morning, the sun is shining, Chris made us a lovely breakfast, so time for a walk with Peanut to see the lake! It’s so quiet, and thankfully very little breeze or we would not have walked very far! It’s nice to get a full view of the bay without all the boats tied up. No brave ice fisherpeople out there yet, but with all the warm weather we have had recently it can be tricky ! Happy Saturday!
So after a good report from my neurologist and generally feeling pretty good I thought I would go back to the gym and see if I can increase my exercise level. It always makes me feel better mentally and in the lovely winter months we need all the feel better we can get. So went twice last week doing a mild routine of walking on the treadmill, mini jogging, at timed intervals watching the heart rate alternated with elliptical for a twenty minute period over lunch hour all was good. This week did two days in a row, missed yesterday but walked 5000 or so steps through the day and last night every nerve pain I’ve ever had jumped out and said hello, along with day two of a migraine. Plus muscle spasms etc. Now we had a pressure change, and it’s been super cold at night which we haven’t had for a while so maybe that contributed. But I am puzzled.
Neurologist says MS doesn’t cause pain. Uhuh. So I what’s up? A flare caused by my brain not knowing what is going on that will settle down as I keep going?
Nothing like a good checkup with your neurologist to perk up January! Yes, I am going to have an MRI as it’s been a while, close to 2 years I think. Canada has approved the 40ml x3 a week Copaxone shot, so I am going to give it a go. It will be so nice to have four less shots to do! That’s all I got.
I think I would blog more if I used my laptop more instead of my tablet, so I’m trying to blog using the speech app on my tablet. Of course it could be a humourous post as the words it comes up with are a little different!
It seems as though this time of year brings about migraines and cluster headaches due to weather pressure,air quality, different diet and who knows what, and the cold and this is my body’s reaction to it.
when at the barn fuck nuts come in oh my God. I don’t know where that last sentence came from, it was SIRI!
So where does the mindfulness come in? Telling my body to get out of bed, to have breakfast; which Chris kindly made sausages and eggs and toast, and then rather than heading back to bed, to wash the dishes and take the dog for a walk in the brisk minus whatever 16C weather so that I can put some more steps on my Fitbit. It kind a looks like a run-on sentence but that’s OK because I think I kind of talk in a run on sentence.
One of the things I got for Christmas from my darling daughter was a Fitbit. I do find it a bonus for two of my main challenges; one being drinking water, and the other being to keep moving, it definitely has an impact, even at work as I get these little vibrating noises on my wrist telling me I need to move and giving me a little heads up when I need it.
that’s writing that whatever. Space space paragraph
So another goal overdue is to learn sign language. I am after all considered to be deaf within the various definitions and while I wear hearing aids I can hear sound, I need to see your lips moving in order to tell what you’re saying especially if you mumble . One of the things that I am able to keep on top of with my mindfulness course is the gratitude attitude which helps me put me to sleep. Ie I think about all the things I am grateful for and also send out love and peace. It may sound Barry but it works.
So maybe now that I’m using the speech app in the blog I might post more. There are definitely lots of other individuals with MS who are blogging and it is interesting to see how we all adjust, to it cope with ,and learn to live with it the best we can . Keeping an open mind , always willing to learn anything, staying active, eating healthy food, all go a long way to managing any Connick, LOL chronic illness. Just remember to listen to your body and if you need a nap, then nap!
Thanksgiving is followed by the Cranberry Festival in our part of the world and of course tied into the beauty of the fall colours. This weekend my daughter brought her beau up to see the part of the province where she grew up, and Chris’ daughters came up for a visit.
My MS is slowly returning from a round of steroids, I gotta say it was amazing, I had energy, my brain was clear, and I felt – normal, I can understand now why some promote the use of a low steroid program for combating inflammation, it felt better than any combination of meds. I still believe a diet of non inflammatory food is important, along with exercise, and a positive attitude and a healthy lifestyle overall is key. MS is so unique to each person, and while I am in the RRMS group, and we have some common elements, how it plays out in our daily living is different.
We were very fortunate to be able to purchase a boat this summer, and living where we do, it has enriched our lives – mine and my partner Chris’ to be able to enjoy our lakes. I am sharing some pictures of our travels.
The thing above love is how it can grow-Sometimes it takes a special person to remind you, or me in this case, that we always have the power to love, the ability to feel loved, even if we wonder why?
I am reminded of this by a good friend, a fellow that I met through motorcycle riding. I’ve known his wife for about 12 years. I’ve always thought she was a strong lady, and I am more sure of this now.
He has what can be considered terminal cancer. If you have experienced or know of someone undergoing chemotherapy you know how devestating it can be to the human body while the drug is coursing through your system trying to zap those tumours, slow the growth and kill the cancer. Scott made a decision to stop treatment, while a decision to stop treatment is a very difficult one, I have total respect for it. Science has come a long way to reduce or hide the effects of chemo, but sometimes it isn’t enough.
Scott’s Team of Hope are having a fall motorcycle cruise -riding a motorcycle is something Scott loves to do. And the friends who love Scott are pushing hope and love and support out there for him. Yes it is a fundraising ride, for Huntsville Hospice…people who care about lives and living and dying with dignity. looking after our loved ones who are dying from cancer, from old age, from an auto-immune disease-just dying. It’s also for the special place that they can go to, although I know from personal experience that the special people who work or volunteer in hospice care come to you too, and their service is such a gift to us and the person they are helping.
Scott may decide to give chemotherapy another chance-things change and our minds have such amazing healing powers that we can tap into, maybe with all the love from his friends, his community, his beliefs, his beautiful family he can kick this cancer, or put it into remission or live with cancer in a way that he can have a quality of life he can live with.
I was trying to fall asleep tonight and I was talking to Scott in my head-Paulette was right there too,don’t worry. Trying the mindfulness relaxation techniques I learned, giving him a foot message, oops , well I hit post before I was ready!
My sister Mary came to me and I felt her love-the tears started pouring down my face and I asked to to welcome Scott, maybe soon, maybe not for a while, I have not felt that love so intensely in a long time- it felt so good -she passed away 23 years ago, but I know she will love him. That is one small gift that Scott gave me, feeling the love from and for Mary again. Thankyou Scott.
Well that was quite a summer!
I am very thankful for the technology that created smart phones otherwise I wouldn’t be able to go back and remember what I did all summer! I found a few pictures, of course had to relearn how to upload them !
Sometime in April or May I had a mild relapse, honestly sometimes I think I know so little about this disease. So my GP suggested a work schedule that while still working half time, would allow me rest days and a shorter work day overall. I think it made a huge difference overall, and I’m starting back to 4 days a week with a break on Wednesdays, and a slightly longer day.
While the summer weather was fantastic for this area, hot and sunny to the point where we had elevated fire bans in August, it was too much for this body. Thank goodness for air conditioning. At home, at work, in the car, without it, I doubt I would have functioned as well as I did. I even went so far as to request a cooling vest prescription and I’m checking out whether or not it is covered.
Some symptoms can be brought on by elevated body temperatures, well any of them really, but the ones that get me are pain behind my eyes, migraines, my right hand doesn’t want to work, and my arm feels like I have a twenty five pound weight attached to it. Some stuff I don’t really even think about otherwise I wouldn’t get out of bed. Depression is also part of it, almost like a cycle, I overdo it, get fatigued, eye pain, migraine, sleep for 24 hours, brain fog, and get weepy, and if it’s too hot, the time it takes for me to go downhill shrinks. I think those who have MS will understand this, or any disease affected by inflammation, or a brain that skewers what it needs to fight.
One of the most enjoyable purchases that Chris made this summer was a lovely boat, 21 feet, big enough to go fast, small enough to take from one lake to another. Muskoka has lots of lakes. So this is something we can enjoy for many years!
I haven’t posted for some time, and I really need to get back on the planet and be more regular.
When I was a teenager I could lie out in the sun slathered in oil and read a book for hours on end. Now, the hours on end is still true, the heat, not so much.
Dry heat with a cool breeze is lovely. In the shade on a sunny day even better. By the water-bonus, and to that end Chris bought a boat. Now Chris likes just about anything with an engine in it, and I have learned much about them over the years, but I must say, he picked a gem of a boat that we can enjoy for many years. This boat, while not brand new, is new to us, and the previous owner took such good care of it, we can only continue to enjoy it and care for it in the same manner.
MS and mobility can be challenging at times or most of the time, and I have a bruise or two from learning to get in and out in a reasonably ladylike manner, so scratch that and just do it lol. It is totally worth it!