30 Things about my Invisible Illness you may not know.

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: M.E/CFS, I prefer the term M.E
2. I was diagnosed with it in the year: 1987
3. But I had symptoms since: On and off since a child
4. The biggest adjustment I’ve had to make is: Having to do far less than I want to
5. Most people assume: That I could do things/see them if I really wanted to. 
6. The hardest part about mornings are: Knowing it will just be a variation of every other day. 
7. My favorite medical TV show is: Casualty..I know, shameful of me isn't it lol. 
8. A gadget I couldn’t live without is: Well, I've discovered that is my laptop
9. The hardest part about nights are: Waking up every hour or so. 
10. Each day I take: numerous homeopathic pills, flower remedies  & vitamins. 
11. Regarding alternative treatments I: take from them what I find useful to help me get through my days....I've never considered any one thing as a possible cure. 
12. If I had to choose between an invisible illness or visible I would choose: Naturally I'd choose not to be will, but as a choice between I would always go 'with the devil I know'.
13. Regarding working and career: What's that!!!!!!
14. People would be surprised to know: How busy and active i used to be, I loved heavy gardening, would happily walk everywhere....whatever extremes of weather. Did Karate up to a year before becoming ill. 
15. The hardest thing to accept about my new reality has been: Not being able to see my grandson on a regular basis, and not being able to play with him any more, or engage in activities with him. 
16. Something I never thought I could do with my illness that I did was:Get Married for a second time 
17. The commercials about my illness: Are very rare. 
18. Something I really miss doing since I was diagnosed is: Spending time with others. 
19. It was really hard to have to give up: My complete independence 
20. A new hobby I have taken up since my diagnosis is: You name it, I've done it. Trying new hobbies has become a hobby in itself.
21. If I could have one day of feeling normal again I would: Walk the dog, get my sewing machine out and make an outfit, take my grandson out, attend a meeting, cook a meal for a huge group of friend....and any spare time inbetween I'd dance. 
22. My illness has taught me: Patience, acceptance, faith, how to appreciate the small and very beautiful things in life. 
23. Want to know a secret? One thing people say that gets under my skin is: I'm passed being bothered to be honest, but figuratively roll my eyes when ones say, Oh, I'm tired too, you'll be better after a good nights sleep. 
24. But I love it when people: Accept me for however I am at that particular time..even if that happens to be something completely different each time. 
25. My favorite motto, scripture, quote that gets me through tough times is: For all things I have the strength by virtue of him who imparts power to me.Phil 4:13 - not that I expect physical strength but boy do I need emotional strength to keep going. 

26. When someone is diagnosed I’d like to tell them: Learn to accept and make the most of your life as it is now, keep hold of the hope of getting better again. 
27. Something that has surprised me about living with an illness is: How inventive you become, in finding ways to carry on doing what you want with the least exertion. 
28. The nicest thing someone did for me when I wasn’t feeling well was: Take photographs of the outside world so I could share it with them.
29. I’m involved with Invisible Illness Week because: It may help someone else, either understand, or see that they are not alone
30. The fact that you read this list makes me feel: That I've reached at least one person.

I Got A Round Tuit with Gluten Free

I'd been having oaty bars most days as part of my diet...oats, dried fruit, nuts and seed..no naughty sugars or anything. I've recently had to go gluten free and discovered that oats, although naturally gluten free, are contaminated during growing and processing. 

Hubby only usually gets one of my bars...hey he can eat anything...but he now has all my frozen batch I'd made for the month - he's a happy camper lol. After being so ill from going glut free I've finally managed to make myself a 'safe' batch. As the Gluten free oats are so expensive, I've had to use half buckwheat flakes.

I don't have a receipe as such - being a 'what's in the cupboard' kind of a cook and make it up as I go along. However, this is my method.

I soak raisin and currents in fruit juice & and the oats separately in enough water to cover for a couple of hours. This avoids the need to add anything to sweeten. I did add a little agave syrup to this batch as the buckwheat flakes aren't to my taste. 

When soaked I throw them together with seeds, ground almonds (sometimes chopped nuts). It needs to be  quite wet but not sloppy...kind of the mixture for rock cakes. Adjusting is done with dry oats or water, depending on need. 

I put it in shallow baking tin, firmly squashing it down, and cook at medium heat for 25 mins. 

An Aviary for Pea

Pea has been bedridden now for 2 1/2yrs. She is able to talk a little more, and starting to look forward to being well enough to do a few things. In fact she's had me send for a few crafting items for her...including a huge box of oil pastels. It's long been her desire to have a couple of little birds when she is well enough to move about...a long way off yet and for now her room is plastered with the prettiest birds in the world. They will be her first pastel subjects. 

Meanwhile I've started needle felting an aviary for her. Above is my first attempt at a hummingbird..she's called him Henry, and below is Hetta, his new companion. I'll be starting on a Rainbow finch next. 

A link to see photo's of Rainbow Finch Here

Life is a buffet

It really is, when you consider all the things we have to get done in a day from just getting out of bed to taking a holiday. Our lives are made up of lots of little events.


Now most people can go up to the buffet table and help themselves to whatever they want...and as much of it as they can fit on their plate. They can even quite often go up for second and third helpings.


For those of us with M.E....well we have to treat life as if we are on a diet. We go up to the buffet table and look carefully to see what we are allowed today - and it's going to depend on how much we have had already..we can't go over our daily/weekly allowances now can we. 


Depending on the level we are at, we may in fact only be able to have the tiny little nibbles that are on the table.....and a very few of them at that. However, a tiny nibble of a few things is far preferable to a huge plate of one thing that will make you, first of all, regret breaking 'your diet' and perhaps have the long reaching effects of making you feel ill for weeks or months. 

My M.E Definitions

My friend Jan asked me today to define the M.E fatigue for her and I thought I'd share it and that way keep a record to refer back to for myself too. I also added a bit about why we have to be so careful with our everyday activites. 

Fatigue.

You have full blown flu, and need to carry the equivalent of your own body weight in your arms through a huge lake of treacle wearing weighted boots.

Why we have to be careful how much we do.

We are like a computer with limited hard drive capacity. Everytime we run a program (an activity) we are using up memory. If we try to run another program at the same time our computer systems slow down, and more and more for each program we are running.  If we run too many programs at once our computer crashes.

We need  to pace our activities and bare in mind that each thing we do has to be run by your computer (your brain). Reading, watching tv, listening to music, shopping, talking to friends dressing etc...but also remember that your brain governs all your body systems too so allow some brain energy to  digest food properly; to think straight and make decisions; to be able to relax and get a good nights sleep; for all your hormones to work; for your organs to repair themselves and work efficiently; simply to breath and have your heart beating without discomfort; and finaly to be able to find joy  in your life.   All these things take brain power...don’t rob your brain of the strength it needs to do these.