Tuesday, September 1, 2015

Severe M.E.

August Journaling
1.     Today was the first time in a long time when we had no plans, and I could sit out on the deck and fill out forms for two upcoming appointments. One last week was 27 pages. It gets a bit ridiculous. Tell us all the investigations you’ve had done and all the doctors you’ve seen and all your meds and colour in a picture of your pain. That was the funniest one. I almost ran out of colours.

2.     Church today, then more rest. I love rest.

3.     We’re going to see our grandson today. I’ll post a pic. He’s six months old now, starting to slide along on his belly, sit up alone for a minute, bounce in his jolly jumper and play peek-a-boo. We only get to see him once every two weeks or so, and he’s changing so fast. It’s also the last day of my husband’s vacation.

4.     I went downtown for a dental CT and got a ride back with my husband. Of course, as usual, I got disoriented and walked in the wrong direction again, but managed to squeak in only a few minutes late.

5.     I had an abdominal ultrasound this morning to rule out gallstones. Every day I have some kind of health appointment. In other news, when I got home I received news that my private LTD was approved! Yay, praise God! It’s not much, but it validates the legitimacy of my illnesses and their approval will help with my appeal with my work LTD. God is faithful and even though our credit cards are maxed, we’ve been able to pay all our bills on time and we’ve always had food.

6.     Today I went to see my Naturopath. Planning a liver cleanse because of all my meds, especially Tylenol.

7.     Tonight we have an appointment at the bank for our daughter’s school.

8.     Friends are hosting a bbq today. Also today is Severe M.E. day. Just another one of my illnesses. Previously called Chronic Fatigue Syndrome, it is too tame a word for it. ME stands for Myalgic (painful muscles) Encephalomyelitis (inflammation of the brain and spinal cord). Because of that the symptoms are multi-system and all-encompassing. It has some overlap of symptoms with Fibromyalgia and often occurs at the same time. But they're different and the focus of treatment is different. For example, mild exercise is recommended for Fibro, but rest for M.E. (my heart rate isn't supposed to go above 100). Also sauna and warm water exercise for Fibro, but no sauna for ME. It’s a toss-up about which one I hate more, the pain from the fibro or the overwhelming exhaustion from M.E., but I think it's the M.E. That's your public service announcement for the day. Carry on. In other news, while I was at a dinner party I had to go into a dark, quiet room by myself because of sensory overload. It was kind of embarrassing.

9.     We were invited to the home of a family from church. So nice that I haven’t had to cook all weekend. I stayed about an hour or two longer than I should have, but I took a three hour nap afterwards.

10.  Today at the pain clinic they’re trying something new. I hope it works.

11. After living with us for 15 years, my mom is moving out today. L She was moved by off duty firefighters. They were very quick. Although I’m happy for her new chapter, and I understand that it’s good for her to be with my sister, who has an empty nest, while we have each other. But I’m going to miss seeing her every day.

12. It’s nice not to have medical appointments for the rest of the week. I have lots of paperwork to finish up.

13. A rare quiet day at home.

14. Paperwork. So many forms to fill out.

15. Family event at my brother-in-law’s house.

16. Chiropractor and massage today.

17. Pain clinic today. No need for top up. Good pain relief for the pain from the neck up. I’ll take it.

18. Preparing for the Carey conference. I’ve been packing for two weeks because the simplest things take so long. I’m looking forward to relaxing and seeing friends and hearing good preaching, but I know the week will be hard on me. While there will be less electronics there, it’s an old trailer and there may be a lot of dust. I hope it will be a restful week.

19. My daughter helped me purge my clothes closet. She was brutal, making me choose between two things I really wanted to keep. It felt good to clear out four bags of clothes for Value Village and another to garbage, but I paid the price. I was on the couch for the rest of the day.

20.  Bad days and less bad days. If I dare to try to get some things done around the house, like vacuuming or cleaning the bathroom, I’m spent. I can hardly remember the days when I had energy to spare.

21. Final day of packing and baking. My mom will stay with our daughter.

22. Travelling to Paris (Ontario) for a week of relaxation. Unfortunately, the packing, unpacking and shopping was too much, and the evening service put me over the top. My back was protesting the whole time. Friends wanted to come over to visit, but I had to decline.

23.  A beautiful day resting and reading on the deck of the trailer. Great preaching as usual. Also saw some friends we haven’t seen in a few years.

24. Good message this morning, but I was unable to make it to the evening session. By whole spine was throbbing.

25. A better day, and we had friends over for a campfire, but then because that was overdoing it for me, I couldn’t sleep.

26. Today is our youngest daughter’s 23rd birthday. Soon she’ll be off to her second year of law school. Our other daughter sent us a video of our grandson attempting to crawl. It’s more like a worm, head down, bum up, head down, bum up, but it’s cute. I couldn’t make it out this evening again, for the usual reasons.

27. Last full day at the Carey conference. Pushed myself to have a campfire and visit with friends.

28. Home again. Exhuasted. Must unpack. Our daughter came by with our grandson, so I’d rather be amused by him.

29. Today is our church picnic. We originally said we’d go, but we’re too worn out from the past week.

30. Lovely day at church today. Nice to be back “home”. Our Pastor is a very good preacher. Today he spoke on being a living sacrifice.

31.  Pain clinic and chiro appointment. That’s all I could manage.

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