GARDENING with CRPS: I’d be lost without it!

 My life before CRPS (Complex Regional Pain Syndrome) was mostly
different to the one I live now, however in the year before, I started a small veggie
garden and loved every part of it. Especially that summer. My favourite memory
of that garden was made of Flat breads with fresh tomatoes, spring onions and
lemon thyme. Put under the grill with some sea salt and olive oil. YUM!! Now I
am really hungry… Anyway I didn’t realise just how crucial that first garden
would be for me. Not only did it introduce me to heirloom tomatoes but it
sparked a passion that would save me in so many ways.

Nectarine and Basil Jam from my first garden. YUM!

Nectarine and Basil Jam from my first garden.

The next summer I was facing a pretty dismal future. I had survived
a massive burn injury, my beloved horse Ernie passed on (It still hurts so much)
and just when I thought I was able to move on I had my first CRPS flare that
made sense of all the strange symptoms I was having. Suddenly this thing was

spreading through my body and I was losing control. Despite it all I just naturally kept gardening.

It hasn’t been easy. I get frustrated when I can’t do things or I
do them anyway and pay the consequences later. But then I know that each time I
go out there, that that night and the next day and maybe even the day after,
will be “off days” for me. But that’s ok because it’s better than nothing and I
would probably be I pain anyway and at least I enjoyed earning it.

Artichoke that I let flower. Amazing color

Artichoke Flowers with the most amazing colour

Emotionally, my garden is my saviour. I am not sure if I
would be here now without it. It gives my head the peace and space it needs
when I am worried or feeling helpless. It gives me hope when I am having a bad
night because in the morning I will be able to hobble around my beds and just
look at what has changed since last time. It’s my distraction from the crap. As
it is on the nights of researching how to make my garlic grow better, as I am
trying to ignore how hard and painful my super cosy bed has become. I have read
articles about how a chemical in the soil can have the same effect on you as a
typical anti-depressant. I really think that they are onto something there.
Perhaps it explains why after a few days in bed I feel depressed like something
is missing. It’s my garden and I need my fix. Over the past 3 years the amount
of gardening that I have been able to do has varied, but I am always thinking,
researching and buying seeds online. What would I do without it?

Physically it is my own kind of Physical Therapy that keeps my body
going. When I had my first flare, my left hand instantly froze and I lost use
of it for a while. It was the slight and gentle movement of picking cherry
tomatoes that slowly got it moving. I know in my heart that my body has benefited
so much from being outside and in my garden. Even just pulling weeds keeps my
arms moving and stops my muscles from wasting. My left arm might not do as much
but the important thing is that it does what it can.

Cherry Tomatoes saved my hand

My Cherry Tomatoes saved my hand in 2013

So far I have refused to get raised beds. Partly because I can’t
afford them and partly because it would feel like a setback for me. It did look
at one stage that I would be in a wheelchair and they were discussed. But for
now I really don’t feel that I need them. I am hypermobile in my hips and the
one thing I can do is bend over and reach the ground. So what was once great for
yoga now allows me to get down to my plants and I am quite comfy like that for a
while. If I need to I can sit on the ground or a stool to get to my plants and
so far I have only had a couple of issues where I have fallen and needed help
getting up. It’s the heavier work where I get frustrated. I can’t do it and I
hate waiting for help. I am learning to be patient and ask for help but I am
naturally independent and I had always been strong and able to do the hard
work. That has been hard for me to swallow

I know that I am so lucky to be able to still do what I can and I
dread the day, if it comes, where I can’t garden any more. I am not sure how I
would cope. For now, I am just enjoying being out there when I can. Being sick
has made me appreciate the small things and all. I know, what a clique. Mostly its
hanging out in the garden with my girls. Gemma (dog), Molly and Moggs (Cats),

Plus all of the cool animals and insects that have moved in since I
turned the orchard organic. Through gardening I have also met other gardeners
and built a little network of people to share knowledge and spare plants with.
I really love that I can provide food for my family and friends. Especially for
my parents at home and my Mum at her Cafe. I supply her all the herbs and greens
that she uses. After all they took me in when I got sick. This is my way of
contributing and it means the world to me.

gemma_zps2e6df28b

Gemma: Top dog in my garden and she knows it!

So that’s me and my gardening with a disability. To end this post I
want to leave a quote that I think sums it all up.

 

“To plant a garden is to believe in tomorrow.”

― Audrey Hepburn

Also posted in my other blog Grow To Heal

Things NOT To Say To A CRPS Patient: and yet they do!!

Ok, I know we all get people/idiots making stupid comments about our illness despite knowing nothing about CRPS/RSD. I have had quite a few myself. The one that outraged me the most was being told to “just get over it and move on with your life” WTF??? where is the button I get to press to turn this off??? I stewed on that one for a long time. I soon realised it was only me suffering. That person had moved on with her life two seconds after saying it. I will admit that I got quite negative towards this person afterwards and ended up cutting her out of my life completely to try and get past it. I’m not sure why this one got to me the most. It wasnt the worst said to me at all. Maybe that I was hurt that she had no empathy for me when I had empathy for her having a husband dying of cancer. I had been very kind to her as I knew her husband well and was deeply saddened by his illness and death. Maybe she couldnt see past her own problems. She could be a selfish person at times… ok she could be a bit of a b****! Either way she had to go because I needed to get past the negativity.

I was also recently told by a Dr that I am too young to be addicted to pain meds. My reply was that I am also too young to be in this much pain. FFS!!!

Today I came around this list of Things NOT To Say To A CRPS Patient. It was quite interesting. Its from a site called The Black and its RSD Links. A page that I am going to do some further reading on. Here below are a few of the things that are said to us. The majority of this list is things said by Dr’s. Im kind of horrified by this. Enjoy.

1. But you look fine.
2. Try not to dwell on it all the time.
3. It’s not a death sentence.
4. It’s not like it’s cancer.
5. Lose some weight.
6. Get more exercise.
7. It’s all in your head.
8. It’s probably the all the pills you’re taking that are making you sick and tired.
9. I’ve seen worse cases of CRPS/RSD.
10. You forget a lot. Try to pay better attention to things.
11. What doesn’t kill you will make you stronger.
12. Are you sure it’s not gout?
13. I knew someone who had something like that and s/he’s fine now!
14. It can’t possibly hurt as much as you make it seem.
15. Why are you on disability? Isn’t it your arm that’s sore?
16. I had a friend that had that. You need to eat a gluten free diet.
17. You’re going to become an addict.
18. CRPS doesn’t spread.
19. Does something like this run in your family?
20. RSD never spread the way you just told me.
21. An spinal block can’t give you RSD.
22. Why you have surgery in your back when RSD is in your lower limb?
23. Did you get all that for a simple ankle twisting? Gosh, you’re weak!!

To make this post a bit more fun, what would be your come back to the stupidity of some of these remarks??? Lets maybe keep it clean and witty. 🙂

Hope your all pain free. xx

 

TWO OUTTA THREE AIN’T BAD! Three pain conditions suck worse than yours!

“Got pain? These three pain conditions suck worse than yours.” paindatabase.com

Ha! Dont you love it when these lists pop up. Designed to make the average person feel better about them self. Sure if you have aches and pains, migraines or any other type of pain reading about these horrific conditions would make you feel better. Unless you suffer from two out of three of the condition in the list your reading, as I do! While I am used to seeing the standard lists with CRPS, my other condition rarely rates a mention, but here it is. and when you cover most of a list like this one, where do you go from there to make yourself feel better? Most of the time I think “at least it wont kill me!”

Here is how the article started but you can also read it in full here

Oh humans. We vile creatures, who feel better when others are doing comparatively worse. Rest assured, reading about these three painful conditions will not make you feel permanently better. But it might give you a bit of temporary perspective. 

no 1, Cluster Headaches: Check! yep I have these mean and nasty things that make me want to cut my face off. They come around every 6 months and make my life hell for anywhere from a day to a week. They are mean and I should probably do some posts about them on here. I have just had a bout in the last few days which is why I had been looking on line for info and came across this article. I woke up three days ago thinking that I had a tooth ache and then realised it was on all of my teeth on the right side. In no time at all it had spread into my ear, my eye, down my check and into my throat, all on the right side and all beyond intense. Lucky i also had a Doctors appointment on the first day so I could finally have it looked at. Yet the past three days have been a walk in the park compared to some of the attacks I have had. Lucky me!

No 2, Complex Regional Pain Syndrome, I dont really need to introduce this one. Most of us know it all too well. I did learn one thing though, That TV show House, The lead character had CRPS apparently. The article said to watch seasons 1-4. Ill pass on that. Perhaps that could go on my new “it could be worse” list. lol, Not my cup of tea really.

“CRPS is a strange condition because it can range from fairly mild to absolutely debilitating. I learned about it after watching House MD, in an episode where Dr. House got shot and forced himself into a coma using a hallucinogenic drug called ketamine. He miraculously wakes up pain-free for the first time in years. “

I will admit though that while “normal” people would look at this list and feel so much better about their own pain, I look at it and feel justified for getting annoyed at those annoying people who post on Facebook how hard they have it when they have it so much easier yet dont realise how much they have. Their health, freedom, ability to work, socialise, meet men, etc.  I guess ignorance is bliss and I may have also been that person once.  Thinking about it, if I could push a button and make all of this go away, Im not sure I would. My pain has changed me for the better as well as the bad and I’m clearly going through this to get to where I need to be. Really though, How tough am I??? 🙂

And I just gotta do it, ever since I wrote the tittle this has been in my head. 🙂 Enjoy!

Why, This Disease Could Be Systematic…

Whenever I’m reading something on CRPS and I see the word “systematic” I feel the urge to follow it up with “Hydromatic…Ultramatic…. Why, it could be greased lightnin”. and then I continue with what I’m reading.
And they say its all in our head!

Some Fun With Pain Charts!

IMG_75621048312196

Pain is no fun! Clearly, It really hurts!

How much more fun is it when you compare your pain to Lego?

I found this pain chart recently and thought it was the perfect tool to make things just that little bit more cheerful. I believe we have the option to make the most of a situation or to just be miserable about things for the sake of it. But being miserable kind of sucks so who wants to do that!  Adding a little cheer to these situations eases the misery and is by far the better option.

Today my pain is so far sitting at a 6/10. My leg is bloody sore and getting worse, but I’m choosing to ignore it by distracting my self with fun things like this chart. I’m hoping to get my pain under control so I can go out and play in my veggie garden for a while. Sunds borring? two words: Fresh Strawberries! lol. That’s what I look forward to each day, even if its just a little wander around admiring how things are growing.  I hope you also have something to motivate you each day. xxx

a little lol!

Not only do I suffer from CRPS but dare I say it, I’m a vegetarian. There I said it please dont think any less of me. lol. Anyway I was just thinking back an a funny thought occurred to me recently that is to do with both CRPS and my choice of diet. There are many people out there who have misconceived ideas of how my not eating flesh effects their life and throw idiotic, generic and un-thought of remarks my way as if I have never heard them before.  Anyway my pet hate is this one, probably because I hear it the most.

Annoying Person: How about all of the vegetables that you are murdering, what about their suffering and pain?

Me: Well actually vegetables do not feel pain because research has shown that they do not have a central nervous system and therefore can not feel pain.

Now normally Annoying Person would be stumped on this one but all of a sudden I find myself thinking “THOSE LUCKY BASTARDS!” lol I wish i didn’t need a central nervous system! But then some Vegetarian would probably feel justified in eating me!