WHAT IS A #SPOONIE…

Question

According to The Huffington Post a ‘spoonie can refer to any individual who suffers from a chronic illness. The term originated from a post written by Christine Miserandino entitled The Spoon Theory‘. In 2010, Christine Miserandino was a college student living with lupus. She and her best friend were sitting in a diner, chatting about life in general. When Christine pulled out medicine to take with her food, her friend asked what it was like to have lupus. Christine was shocked not only because she asked the random question, but also because she assumed she knew all there was to know about Lupus. She went to doctors with her, she saw her walk with a cane, and throw up in the bathroom. She had seen her cry in pain, and so she wondered what else was there to know?”

Miserandino hypothetically measures her ability to carry out daily tasks by counting spoons, to show that while sometimes she has an abundance of spoons, other times she comes up short. (If you haven’t read the post yet, it is definitely worth checking out.) Since that post, “spoonie” and “#spoonie” have been used on sites like tumblr, to connect people living with chronic illnesses.

Another site who writes about The Spoon Theory by Christine Miserandino of But You Don’t Look Sick, is  ‘Counting my Spoons‘. by Julie Ryan, who is herself a Spoonie. She also runs another site ‘Chronic Illness Bloggers ‘ which I am a member of and which is a network for those who blog about chronic illness. All chronic illnesses are welcome there and they have a supportive community for bloggers, where anyone can share ideas, blogging tips and brand collaborations.

You can also go onto Twitter and write #Spoonie  in the search section where you will find lots of posts on chronic pain sufferers and links to other organisations. Of course that’s not the only media to have Spoonie groups, you can also find a number on Facebook and Pinterest as well as many more media sites. Feel free to add a link to your ‘Spoonie’ blog or website in the comments section of this post.

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WORKING WITH CHRONIC PAIN…

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I know I am far from alone in suffering from chronic pain, and I am sure I am far from alone in struggling to find work that is suitable for this problem.

Trying to find a part time job to suit someone in chronic pain is almost impossible. It needs to be something that you can find around your pain.

When I got the job writing about the village activities for my local newspaper I felt like I’d won the lottery. It could not be more perfect, I could work in my own time at my own pace just as long as I had all the stories in by a certain day. That meant on my good days I could do a little more and on my bad days I could do none at all, or if the pain suddenly came on it meant I could stop until I felt more able to do it.

Unfortunately like most things in life the job only lasted for a few years as the newspaper could not afford to keep on the local writers.

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Since then I have constantly looked for something similar to do as my pain was increasing rather than decreasing. There was absolutely nothing locally so I resorted to searching the internet. Quite a few were just a big con with enticing amounts of money you could earn to draw you in, but money doesn’t grow on trees so really I should have known better than to even try them.

Eventually I got into the blogging business and again read stories of people making lots of money as a blogger and yet again realized it was not as simple as they said but I enjoyed blogging so carry on at my own pace.

I also like to sell on Ebay, just any bits and pieces we don’t need (you would be surprised what people will buy) and also clothes, but even that can cause me a lot of pain as the wrapping and packing them up can soon irritate my neck and back, even if I wrap them sitting down.

It’s the same with the cards, I love making them but I have to stop after just making a few. It’s extremely frustrating to me as I am sure it is to others but if I did absolutely ‘nothing’, I think it would drive me insane.

I have seriously thought about starting a website specifically for jobs for people with chronic pain who can only work when they are not in pain. I’m not really sure how I would set it up, I just know that if there was one available I would be the first customer on their list.

Do others in a similar situation to me feel the same, or am I just a bit hypo-active and should learn to just make do with what I can do?

Question

If only the pain would go away then I could……………….

If only the pain would go away then I could help all my family that need me. I know you will all say its my fault for the pain I am in at the moment but when your family needs you, you just go and deal with it.

After a couple of days with my daughter in London who looks after me like a Queen I am still in a mess with terrible lumber pain today but I am soooooo glad I went. She had a very bad night on Sunday with pain and I will be anxious now until her operation in December but with her partner away on business I decided to go down and stay with her for a couple of days.

London is always the same with anyone and everyone in what seems like a rush to get from a to b and although my daughter carries everything for me and sees me onto the tube, I still find it exhausting.

When I got home yesterday afternoon I just collapsed as I felt so tired and didn’t phone my Dad until this morning and now I feel really guilty as he was not impressed that I had not phoned him last night but I just didn’t have the energy to even talk.

I feel like I’m being torn from pillar to post and just feel that if only the pain would go away I could help both Dad and my daughter at a time when they both need me so much. I’ve got the social services assessing Dad again today and am awaiting her phone call to me to tell me how things have gone on but really the only way I can look after Dad is if he came to me for some rest bite, but I just can’t seem to convince him of it.

My daughter would never ask for help (she’s just like me) but I know when she needs it and being closer to home would be just great but you can’t help where you all live. A friend has just sent me an email which I just had to put here as so much of it is so true …………

Written By Regina Brett, 90 years old, of The
Plain Dealer, Cleveland , Ohio

“To celebrate growing older, I once wrote the 45 lessons life taught me.
It is the most-requested column I’ve ever written. My odometer rolled over to
90 in August, so here is the column once more:”

1. Life isn’t fair, but it’s still good.
2. When in doubt, just take the next small step.
3. Life is too short to waste time hating anyone.
4. Your job won’t take care of you when you are sick. Your friends and
parents will. Stay in touch.
5. Pay off your credit cards every month.
6. You don’t have to win every argument. Agree to disagree.
7. Cry with someone. It’s more healing than crying alone.
8. It’s OK to get angry with God. He can take it.
9. Save for retirement starting with your first paycheck.
10. When it comes to chocolate, resistance is futile.
11. Make peace with your past so it won’t screw up the present.
12. It’s OK to let your children see you cry.
13. Don’t compare your life to others. You have no idea what their journey
is all about.
14. If a relationship has to be a secret, you shouldn’t be in it.
15. Everything can change in the blink of an eye. But don’t worry; God
never blinks.
16. Take a deep breath. It calms the mind.
17. Get rid of anything that isn’t useful, beautiful or joyful.
18. Whatever doesn’t kill you really does make you stronger.
19. It’s never too late to have a happy childhood. But the second one is
up to you and no one else.
20. When it comes to going after what you love in life, don’t take no for an
answer.
21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don’t
save it for a special occasion. Today is special.
22. Over prepare, then go with the flow.
23. Be eccentric now. Don’t wait for old age to wear purple.
24. No one is in charge of your happiness, but you.
25. Frame every so-called disaster with these words ”In five years, will
this matter?”.
26. Always choose life.
27. Forgive everyone, everything.
28. What other people think of you is none of your business.
29. Time heals almost everything. Give time, time.
30. However good or bad a situation is, it will change.
31. Don’t take yourself so seriously. No one else does.
32. Believe in miracles.
33. God loves you because of who God is, not because of anything you did
or didn’t do.
34. Don’t audit life. Show up and make the most of it now.
35. Growing old beats the alternative — dying young.
36. Your children get only one childhood.
37. All that truly matters in the end is that you loved.
38. Get outside every day. Miracles are waiting everywhere.
39. If we all threw our problems in a pile and saw everyone else’s, we’d
grab ours back.
40. Envy is a waste of time. You already have all you need.
41. The best is yet to come.
42. No matter how you feel, get up, dress up and show up.
43. Yield.
44. Life isn’t tied with a bow, but it’s still a gift.
It’s estimated 93% won’t forward this. If you are one of the 7% who will,
forward this with the title ‘7%’. I’m in the 7%. Remember that I will
always share my spoon with you! Friends are the family that we choose for
ourselves.

I am sure you will all agree. Thank you my online friends for the support you have given me since starting this blog.

My computer crashed OMG I was in total panic

88|My computer crashed on me last night after spending quite a long time setting up a “Fighting Chronic Pain” group on the Wellsphere website and I felt as if I’d had my left arm taken off. :??:

I could hardly sleep worrying about how I could manage until it got fixed and realised just how much I am online and use my little laptop. Its always near me as I can even use it lying down my putting it on a cushion. Being secretary trained I never have to look at the keys so its very easy for me. I just can’t tell you how I felt. Awful wasn’t in it.

Anyway I spoke to my son this morning and he said try rebooting it which I did last night and nothing happened but this time its come back on again – phew !!! what a relief, and what a buzz I got when I saw how many people had left comments on different posts. This is soooooo therapeutic you have no idea. Trouble is I just can’t understand people who don’t enjoy being online and either writing or finding out anything you could possibly think of. Am I sad or what?

Well now that I know its all ok again I guess I ought to wash the breakfast dishes and get some food in for the weekend then I can get back and settle down with my laptop later …….:DD