It's been a while...

It has been a long while, but the good news is that I'm feeling much better than I was two years ago and the long rest and pacing has done it's job. I'm now able to do many more things than I used to be able to and am incredibly grateful for this. I believe that keeping positive and trying to see this flare as an opportunity has helped tremendously and in the last few months have started some projects!

I've been writing quite a bit and in recent months have created a book review website where my sister in law and I are going to read books - mainly chicklit - and give them reviews and a rating. No sense floundering around hoping for a good book and we HATE it when we get bad ones, especially from authors we love which happens from time to time. You can check out our website at www.novelescapes.com if it sounds of interest to you.

Unfortunately because I still don't have as much energy as I would like, I have been very slow to design the website (by myself, and was it ever a learning curve!) but it's up and running now with a few glitches, but I'm working on ironing out the kinks. I'm not sure if I will be continuing this blog, or if I'll be starting a new one about our book reviews, or both! But I will keep you posted either way - if there's anyone out there that was still following me!

Take care and fibrohugs to all!

A fond farewell...for now...

It's been a while and unfortunately it looks like it might be a while longer. Unfortunately I have not been feeling well enough and just can't keep up with many things including this blog. So not wanting to disappoint those of you out there that subscribe I have decided to suspend my writings until I am feeling well enough to do so. I need to focus on healing and will continue again once I am well enough.

I have not decided if I will leave blog up or not, but should you like to be notified in the future if I am able to start up again, send me a quick email and I will save it for possible future use.

Thanks for listening to me and all your kind words, they have helped me tremendously!

Lydia

Asking for Help

I hate to do it. I really do. I hate to admit that sometimes (really most times) I need help with certain things. There are activities I cannot do anymore which has taken me a long time to admit. Gardening, which I avidly enjoy, has been my biggest revelation as this has been the first full gardening season in our house. Gradually over the summer months my legs started cramping up any time I'm bent over or crouched down so I have been able to do less and less in the garden.

I actually really didn't do much this year but pick the flowers to plant and then gradually put them in the ground while sitting down in the spring. My husband really did all the work, all the heavy stuff, digging and moving soil, which I am eternally grateful for as I would not have been able to have the beautiful flowers this year without him. I wanted to create a haven in my backyard for myself to sit and ponder life's mysteries, which I'm no closer to figuring out, but have had plenty of time to think about them because I have to water the garden every day since we've had so little rain. This is an activity I can do, and usually enjoy, but the amount of time required to water lately has been a little ridiculous and I started to disliking my garden and wondering about just putting in shrubs to avoid all the work next year, and work it is.

Work I have been unable to do, so the weeds took advantage, marching all over my beautiful gardens and as much as I could pull out a few clovers once in a while, the dandelions and thistles that were growing needed much more attention than I could provide. I ignored the problem for a couple of months until they grew out of control and I could take it no longer. It wasn't just the watering that made me want to plant only shrubs, the weeds were also chocking out my enjoyment of the garden.

I swallowed my pride and called my mother, an avid gardener for help. She obliged and we spent a morning in my garden. She weeded while I sat on a chair nearby to chat. I admit, I tried to help her some, and did a little, but no where near the transformation of my garden that she helped me with. It would have taken me a year to do what she did in five hours and I am so grateful for her help.

Now, instead of having a mess of a garden I had grown annoyed at sitting in, especially seeing all the gardening I wanted to do yet couldn't, I have a wonderful area of my home to enjoy again. All because I asked for help. I should learn to do it more often. Not only did we have a nice morning together that we both enjoyed, but I got my garden back.

Surrendering to the Pain & Fatigue

Sometimes I just have to admit that I cannot do it all. I must acknowledge that I need to spend the day in bed. I can see the patterns in doing too much and then crashing or having a bad nights sleep and then a horrible day. Unfortunately both seem to be happening too often lately.

My sleep seems to have been overtaken by some unusual muscle spasms, twitching and just general uncomfortable feeling so I seem to be squirming all night long and waking myself up. It's really quite difficult to even explain, but I'm wondering if it could be restless leg syndrome. Something else to add to my grab bag of medical issues, and it is definitely highly irritating.

I have noticed a large impact that sleep has on my overall well-being and symptoms. Last night I was in bed for 11 hours, asleep for 8.5 of those and when I was sleeping, it wasn't great with all the tossing and turning I experienced. I am paying for the lack of sleep along with my overall activity level of the last two days where I felt better and did way too much with all the excitement.

I am learning slowly though how this crash pattern works and how it affects me, so hopefully one day I will be able to maintain more than just a couple of days at a higher functioning level. Hopefully at least higher than this morning where I screwed up not one, but two recipes when I was baking. Luckily neither turned out horrible and are still edible, one is just missing an ingredient and the other I forgot to double a measurement. Ooops. My husband said "Oh well, you have tonnes of zucchini in the garden to make more." I do have an inordinate amount of zucchini from the garden, but that's not the point. I complained to him about all the other ingredients wasted and then suddenly realized the worst waste of all: my precious energy.

By the way, here's a link to the activity log that I use:

http://www.ocfp.on.ca/local/files/EHC/ActivityLog%20&%20FunctionalCapacityScale.pdf

Multi-tasking with Fibromyalgia

I have come to acknowledge as of late that I am not the great multi-tasker that I had always claimed myself to be in job interviews. I am unsure if this is a new development for me but it is something I have definitely noticed as of late. I have not done much research about it in relation to fibromyalgia, figuring it's just all part of my brain fog.

I have trouble when I am interruped (lately usually with the dog, so maybe that's why I've noticed it recently) and have to go back to what I am doing only to get confused as am not able to do think about the two things at once. I am completely unable to read anything and pay attention to what's on the tv. I used to be partially able to do this, but not like a few people I know that can do both. Or even my dad who watches tv, listens to the radio and reads all at the same time and can understand all three (I used to quiz him as a kid, unable to believe he could do all of them).

When I am online researching various topics and am about to do another search, if I get interruped, I completely forget what I was about to search. If I am reading a recipe and get interrupted, I always have to check back for the correct measurement. Writing something and get interrupted, I can become quite sassy as I inevitably forget my thoughts and the words I was about to write. My job - well, I won't even go there. It affects me there when I am well enought to attend, but it's not the end of the world.

I see this is just another way this disorder affects my job and my life. I've had a spark of creativity lately and am pursuing some online ventures which I am having a difficult time researching, let alone remaining focused on any particular aspect because there is so much to think about and consider. I'm quite excited so am even more disheveled and my adreneline pumping makes me slightly more distractable.

So, I am a distracted excited bundle of adrenaline, suffering from brain-fog and fatigue from all the excitement (and my over-use of the computer I'm sure) and am increasingly frustrated by my lack of ability to get things accomplished. Hence I'm off to have a rest, hopefully this time I can turn my brain off, which has been increasingly difficult as of late leading to some intolerable insomnia, making everything so much worse! I am hopeful that once I have rested, I will have further brain power and energy to continue my efforts.

It's been a while

I have been MIA for a little while tending to my sick puppy who left me more than a little tired. He's been fine for a while now, I'm still recovering though. I have also now seemed to develop insomnia sometime last week which has left me just a slight bit unwell. I wander through my days in a fog and crawl into bed exhausted yet am unable to sleep. Last night was by far the worst, taking over 3.5 hours, finally to fall alseep after 12:30am.

I am eagerly awaiting my first visit with my new specialist in just over a week and have many things to discuss with her, including this new development, and am hoping the appointment will be long enough to include all of my questions if I can remember them all. I really should start writing them down. This fatigue is worse then ever with the shorter hours I am sleeping (I'm still getting up at 7:00ish) and my brainfog is growing thicker.

I am really trying to remain positive though and am hopeful that it will pass (QUICKLY!) and be only a phase as I'm not sure how much of this extra fatigue I can handle. I'm sorry this is going to be so short and not very insightful as I have not had too many enlightening things to write about lately nor the energy to do so, but hopefully this will change...soon!

Be Well!