Chipping away at the stone

So my fibromyalgia is back with a passion, making every muscle ache. I tried to take a bath a couple of days ago and I had great difficulty getting out. I had to use a pillow under my knee and I had no other option than to lean on it to get up. It was so painful and the consequences are enormous.

I know I shouldn't have tried with both knees with torn menisci and other ligament damage.  I was in so much pain that I longed for a bath to hopefully relax my muscles. It didn't. Nor did it help my sore neck with another episode of polymyalgia rheumatica.

This constant pain is wearing me down. My doctor is too afraid to give me pain relief and I am considering changing doctors. This creates anxiety in me. And to top it all off, I have been cranky and not really a nice person to be near at the moment.

With Chris ill himself, I seem to be carrying everything myself with no help in sight. Take this morning for example. I put on a load of washing, cleaned Xena's litter tray and unloaded and loaded the dishwasher.

Testing our blood sugar level before breakfast,  I asked Chris what he wanted for breakfast. He told me what he wanted, just sitting there waiting for me to get it for him. I am sorry to report that I arced up and told him to get it himself.

I added some other truths about him acting like he's the only one with pain and that I am tired of being his servant when all he does is watch TV and sleep all day. You gotta understand, that usually this isn't an issue, but the pain has truly worn me down.

Chris asked me what I had done so far this morning. I told him and he replied that it isn't necessary to push myself like I am doing. Push myself? Doing minimum household chores?

I told him I was just trying to live a normal life and he replied, "But you aren't normal! You have got to realise that and accept it!" But in fact, what I do is pared down to the bone housekeeping compared to what it was even 10 years ago. How much less can I do and still manage to live a relatively clean and organised life? Single handedly.

Over the 23 years of having fibromyalgia I have had a determination like stone. I would not let fibromyalgia or indeed any of my other painful conditions control my life. And for the most part it hasn't. Until today. It's chipping away at the stone.

We only live once

 The Victorian Government has lifted some of the travelling bans here and so we decided to go for a long drive today. We were so glad to be able to go visit our daughter who also lives in Gippsland. 

We were overjoyed to see a double rainbow on our way home. It was so vivid and we felt like we were actually driving through it. 

Yesterday was a day of severe fibromyalgia pain, but I decided to try to focus on positives and I didn't have to look far. The same daughter we visited today has had leukaemia and she had a phone consult yesterday from her haemotologist, who informed her that she was still in remission.  

Laying in bed last night, I tried to ignore the aching muscles, stiff neck and back and I decided to dwell on the many ways I have been blessed daily. Certainly the blood results were praiseworthy. I fell asleep praising and thanking God for the miracle of her life. 

I woke up still in pain, as the weather was inclement, but I needed to go to the chemist, so I forced myself to get dressed and go. We then proceeded to see our daughter, glad to be able to at last visit someone and drive in the car! 

I know I will most likely wake up in pain tomorrow, but I weighed it up and decided that seeing my girl and going for a drive would be worth it. So I will plan the next few days accordingly.

I will be preparing an easy stew in the slow cooker tomorrow.  I will be doing just the essentials in the house- for me that is putting clean washing away and doing tonight's dishes. With my arms tingling and feeling like my muscles and tendons are tearing, I won't be doing them tonight. They will be there in the morning...

Life with fibromyalgia is a juggling act and a life of constantly meting out spoons and rest breaks. Every day one has to decide if a certain activity is worth the pain to follow it. Sometimes it is.

We have to weigh up the satisfaction and pleasure of today against the certain knowledge of a painful tomorrow. We often have to choose to live and we suffer physically for it.

Fibromites have to plan to live or we will die inside through boredom, loneliness and regret. We must know that we could cocoon ourselves today only to find we suffer tomorrow anyway.

Along with the pain of overprotecting ourselves, comes the feeling of regret. Choose carefully and try to find joy every day. We only live once.

I aint no cry baby!

So a few days ago it was my birthday. The day started well with Chris giving me breakfast in bed. During the day I facetimed with my family. 

We usually go out for a meal on each other's birthday, but of course with Rona, we had a change of plans. So Chris took me to KFC drivethrough for dinner. We ordered our meal and then ate it in the carpark of Safeway, under the romantic light of the trolley bay!

The rain was belting down and we sat there reminiscing about earlier days and how different things are now.

But we never let Rona spoil our moment. At nearly 70, life teaches you many things. One thing appropriate for now is that you gotta bend or you will break..... 

Seems like at my stage of life and health, bending to difficult circumstances is the only bending I can do.... and laugh. Yes, you gotta laugh. Or else you cry. And I aint no cry baby!

Things on my to do list:

1. Fold and put away washing
2. Do a roast lamb in the air fryer for dinner
3. Clean my kitchen

Calling in my spoons!

It is 14C or 57.2 today which is good weather for being busy. I need to devote today to saving my produce and freezing it and cooking. 

I have bought too much fresh produce and I am not getting to use it before it goes limp. In my crisper are 2 bunches of celery, 2 leeks, 3 halves of pumpkins, 3 lettuces and 2 packets of carrots. Even by making some soups, I will still have too much. The veggies are not mouldy or brown but definitely not crisp- they are limp. 

I will freeze lettuces, celery, pumpkins and carrots and the two bags of brown onions expiring there as well. I have been obviously buying up big in the produce to try to stockpile a bit, but it's all going pear shape! 

I really can't afford to waste my money by throwing it out. I have to freshen them up and prolong their life.

I plan to make some  butter tarts, some sultana muffins, some cookie dough that I can freeze to use on the days when fibromyalgia has me snookered. I will be taking out some lamb steaks to thaw for dinner tonight, which will be steak, mashed potato and peas and gravy.

Mostly it will be a kitchen day today, as long as my spoons allow anyway.  I am sitting here calling in my spoons! 

A neighbourly thing to do.

So I did my grocery shop online yesterday. Sadly, they were out of stock with sugar. So Chris and I went to the supermarket to get that and some other essentials like milk (out of stock) and bread.

No white sugar at all... just dark brown. So there I was thinking all was well with my stocked pantry, only to find I have one small canister of sugar left.

We put out the call to local family and fortunately for us, they have plenty and are willing to share. They are going to leave some for us on our front porch.

Whilst the supermarkets were restocking the shelves, Chris told me that they were unpacking unessentials. All the essential stuff: toilet paper, hand sanitiser, milk, bread, flour and sugar weren't available.

Chris went in by himself and I sat in the car as it's silly to have both of us go in for a few things.  Besides, I was saving my spoons for today. I have some household chores to clean up and it is a race between detemination to get it done and my spoon swallowing flare of fibromyalgia.

So on today's list is:

1. Folding more washing and putting it away
2. Doing last night's dishes and this morning's as well
3. Making some mini quiches to freeze
4. Making cookie dough also to freeze

I think that will be it for today for my spoons and definitely it will be it for my sugar. Such a small thing until you run out of it. Now I can obviously see that lending a cup of sugar is a neighbourly thing to do.

It's just the nature of the beast!

I wish I could tell you that my fibromyalgia flare is over, but I can't. This morning I woke with so much pain that I took my bath in the morning instead of at night, hoping it would unkink all my sore muscles. It didn't.

As I lay in the bath I planned my day and prayed for the energy to do it. If determination was the only way to get through, it would be a breeze! But alas, determination does not equate to spoons (energy), and at the end of the day it can actually lead to false guilt if I can't achieve what I wanted to.

In chronic illness, I find that whilst it is good to make plans, it is unlikely that all will be accomplished. Like me knowing that my diabetes is out of control (11.6) and I simply must accept that I cannot take much sugar in any form, I must accept that I can only do so much. Or so little. 

So, it's no good flogging myself like a dead horse. It is what it is. What gets done, gets done. What doesn't, doesn't. 

So today, I am just following Monday's List. And preparing a curried sausages in the slow cooker for dinner. 

If I get everything done or not, I will have to learn to be content. Chronic illness is tough, but I will have to accept it: it's just the nature of the beast.

Grateful for my servants

So today has seen a slight improvement in my sugars. They were 9.5 this morning which is a lot better than 11.6 yesterday. I have been very careful of sugars in what I ate and the results are pleasing.

Also I have less pain and I think the fibromyalgia flare may be abating. So today I have added a few things to my to do list- things that will be a lick and promise only: I have had to give up on my perfectionism.

1. Do a couple of loads of washing
2. Cook some minestrone soup in the slow cooker
3. Change our bed
4. Vacuum and sweep an area of the house
5. Order online groceries for tomorrow
6. Cook curried sausages with rice for dinner

I am determined to do at least some of these things today and I have enlisted the help of some of my servants. 

Top of the list is my Dyson stick vacuum because it's not heavy, does a great job of picking up Xena's white fur and does not hurt my back.

Second favourite servant of mine is my dryer which saves me a lot of spoons in hanging the washing out then bringing it back in.

Having said that, I am also grateful for my slow cooker, my front load washer, my microwave and my toaster. I don't know how people managed in the past without these. I am grateful for my servants. 

You can't have one without the other!

Having to pace myself yesterday, I woke with some spoons which was just as well as we had to take our daughter to the Alfred Hospital in Melbourne. She is a survivor of APML leukaemia and she needed her six monthly blood tests in preparation for her visit with her haematologist next month.

As we had to be in Melbourne early, we had an early start from home. We virtually just had breakfast, dressed and ran out the door. So no lists or housework plans were made. That will have to be tomorrow.

The trip was 400kms all told and it was very tiring. For all of us. We all had a nana nap when we got home.  We got some fish and chips on the way home as we just wanted to eat and crash.

In this picture of the Alfred, you can see the room I was in when I had my 3 stents put in in 2007. It's the third level, last window on the right. Chris and I would watch the helicopters come in on the heliport just in front of the hospital. It is built over the road and leads directly to the Trauma Centre.

So, housework wise, it was a dud of a day, but we were able to help our daughter with her cancer journey, fulfilling our promise to her the day she was diagnosed. 

In chronic illness you sometimes have to push yourself to live the life you want. It isn't easy: in fact it takes a lot of determination and prayer.  Lots of both. I don't think you can have one without the other!