Lets Netflix and…

I recently asked a CRPS Facebook group what they needed to get through a bad day with a flare. It really surprised me that around 95% of responders mentioned Netflix and other streaming services as one of the best tools for getting through the day.

The reason for that is purely for the distraction it offers us. Its a tool for keeping our mind off of that nagging pain. We know it hurts but our focus is shifted. We can put on something easy to watch and zone out for a few hours. My choice of easy viewing today was Kims Convince. A great comedy that even made me laugh despite my mood and the extra pain meds.

I know that people with chronic pain have survived and coped long before the internet and streaming services. But I also know that many have not. So its a positive move for our lot. Its better than daytime tv and books we cant focus on, or hold.

I have only had Netflix for the past 9 months. I resisted it before and I am so glad to have it today. Although I dont like using it all the time. Its still important to get some sort of excersise. But some days that isnt going to happen and on those days its best to stay in bed and Netflix and… Chill? Or just try to distract yourself from the pain.

I hope your having a pain free day. Thanks for reading. Xx

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Life with CRPS: Something to look forwards to!

I just had a bit of a profound thought and figured it would be worth sharing.

Life with CRPS can feel pointless at times and I remember in the early days feeling so scared and thinking my life was over, pointless and I only saw a future of pain. Everything I enjoyed doing was taken from me and I felt I had nothing left. I’m sure that’s a feeling that anyone with CRPS can identify with.

So I was just thinking about how I have developed a love of indoor plants as a new hobby and when I am laying in bed during the night I often look online and plan the plants I want to buy. Each fortnight when I get paid I get excited if I can afford to buy a plant or I find a great buy from a private seller and get a propagated cutting for $10. I live very cheaply and my one extravagance is a plant. I was worried I was a little obsessive and I do get some negative comments. But I realised why it’s become so important to me…

I need something to look forwards to!

It’s simple really. Most people have a sport, concerts or just going out on the weekends. but I don’t. I am not working and am struggling to find work, let alone an interview. I am single and have a chronic illness (attractive) and that may never change. And I am 36 and any chance of my having kids is getting less and less. So my future could be lonely if I don’t do something. But having my plants makes me happy and in a life that once seemed pointless, that’s really important.

My Heart Leaved Philodendrons ❤️

It’s no different to someone needing their weekly game of soccer to unwind from their shitty job. My “job” is shitty to. So I deserve to have something to look forwards to.

So… I am not going to feel guilty or embarrassed that I am buying more plants. I won’t be sneaking any more plants past my housemates and hiding them incase they think bad of me. They don’t, but it’s ingrained in me anyway. I won’t accept hearing “not more plants” again or someone rolling their eyes because I’m off to pick up a plant. At least I am going out and having an interaction with someone. Yeah, I will be sore and exhausted after. But it’s better than staying home sore and exhausted anyway.

My Philodendron Micans. Love those velvet leaves.

This could be any hobby, not just plants. It could be clothes, model trains, Star Wars memorabilia. It doesn’t matter. The main thing is that we have something to look forwards to.

I am now meeting other growers, I’m leaving the house to go to the plant shop, I am even planning a plant swap event, which I never would have done before. Putting on events is a connection to my old life. It’s better than sitting at home depressed.

My Manjula Pothos.

Also I could be doing drugs or gambling the little money I have. After all, not all that long ago my life had no point. It would have been easy to give up. So as long as my bills are paid and I have food on the table, who gives a crap if I come home with another plant. It makes me happy and I deserve to be happy.

So anyone that criticizes my plant Colection can shove it. Sure I might only talk about my plants, but maybe they should appreciate that their life hasn’t been reduced to only having that to be excited about. Why belittle the one thing I have?

Of course it’s not my only hobby now, but it’s the most prominent at the moment.

I’m so glad I am not that same scared person I was a few years ago. I’m glad I now have things to look forward to. It’s so important and not talked about enough in our community.

You can see my plants on my other blog or Instagram

I hope you’re feeling well. Xx

What are your things to look forwards to?

10 THINGS I WILL NEED: to get me through winter 2019

Winter really is a crappy time of year for us CRPS sufferers. The cold gets into us and causes all types of havoc to our bodies.

So I thought I might share with you the things that I use to help me through the cold. Here goes..

1, My Electric Blanket this is essential when it’s cold. Because we spend a lot of time in bed when we are I’ll. I have also found it the most affordable way of staying warm over night or even through the day when your in bed watching Netflix to avoid the Pain. I often turn it into high for 20min before going to sleep to heat the bedding and mattress. That seems to keep me going through the night.

2, Track Pants and Hoodies. These two go together for me. When I am home I live in this combination. It’s warm, cozy and doesn’t seem to bother my body. I sometimes even sleep in the two.

3, Mittens better than gloves because you can still do things with your fingers, but you can also pull them down to keep your fidgets warm. I have multiple pairs of these and I always get a few new ones every year from eBay for around $1-5 a pair. So cheap that you could have a pair for each day of the week. I really love these and having CRPS in my hands, they really help me out in winter with out hampering finger movement.

4, Heat Packs. There are lots of different forms of heat packs available. My prefered type is a simple wheat bag that you warm in the microwave for 2 min and it moulds to the part of your body that you want to warm. I get very sore and tight muscles after big flares and these are great for those times. Hot water bottles are great as well. But there are also electric ones and heat packs that you press a button and it releases heat somehow. But fore a simple wheat bag does the trick. They are also easy to make if you have a sewing machine. A quick google will lead you to instructions on how to make them.

5, Heating In an ideal world I would have a wood fire to heat my house. I had one when I lived with my parents in the first few years of being sick. But, I don’t have one so I need other ways to warm the house. We have central heating that we don’t use very often. At night I usually sit in my room watching TV, so if I need to heat my room I will start with having my curtains open if it is not too cold out. This raises the room temperature because I get afternoon sun. I then close my blockout curtains at around 4pm and if it’s still cold I use an oil heater for an hour or two to heat the room up. Because I live in an old solid house, I put the heater next to an internal wall and the wall acts as a heater for hours after the heater is turned off. The reason I don’t use the heater more is the cost. I worked out once that it costs about 40c an hour to use the oil heater. Over a day and then a month, that adds up. Especially when your not working. So I only use my heater when it is really necessary.

6, A good pair of slippers. It’s really important to keep your feet warm when it’s cold. I have found that my feet can’t stand cold air on them so I am better off with something on them. I usually wear a pair of slippers boots to keep my whole foot warm. I get them from Kmart or Big W at the start of winter and they are usually around the $10-15 mark. I like them soft inside and either memory foam or well padded on the sole. I also wear them all the time at home.

7, Warm Bedding. When I moved out of my parents house, I made sure that I invested in a good quality, light weight synthetic quilt so that I would have maximum warmth come winter. I am so glad I thought ahead and got all of my bedding cheap in the boxing day sales. AfterPay helped me to be able to afford it as well. I also have a couple of patchwork quilts that my Nan made for me. So I have maximum warmth without the weight hurting me. It’s definately a must.

8. Lap rugs. I love being. Wrapped up in a warm blanket while watching tv in the lounge. I have either a patchwork blanket (My Nan keeps me well stocked) or a knitted rug. I know some people like electric throws, but I haven’t tried one yet. It could be worth it though. I just use a heat pack and a blanket though.

9. Warm Cups Of Tea. I drink a lot of tea in the winter. Plus a coffee in the mornings. I love wrapping my hands around the warm cup. It’s so good for my hands and my soul.

10. My cat Molly. Need I say any more. She keeps me warm when she is on my lap and keeps me company when I’m in bed. She is the perfect companion.

So there is is. My top 10 things to get you through a winter with CRPS.

I hope this helps in some way.

Stay pain free. Xx

Insomnia: We are NOT friends!

Simply put, Insomnia sucks!

That statement alone could be all I write here and this post would be complete. But I feel like talking about it a bit so here goes.

For me I either have Insomnia or a I sleep non stop. I’ve had a few stints where I slept normally and it was lovely. Right now its 5am and I have been awake since 3am so really the 3 hours of sleep I’ve had is a good night for me. My longest period of no sleep was 6 days. I was a mess at the end of it. After 3 days it starts to mess with your head a bit and by 6 you feel insanity creep in and your a walking zombie.

I have read all the literature on how to get to sleep and create a sleep positive environment and for me it doesn’t work. Simply by laying there trying to sleep, I will not fall asleep. I get frustrated too easily and it just keeps me awake longer and longer. It just doesn’t work for me, because damn Insomnia keeps getting in the way. I have found that if I am going to sleep then my best chance is to distract my self and the insomnia until I get drowsy and drop off to sleep. To do this I might read a book or on my phone. Watching a movie or Netflix is great as well. These are my go to distractions because I can just drop off when I need to without my brain/insomnia realising what’s happening because its too busy relaxing to a few episodes of Brooklyn Nine-Nine. (One of the best show’s ever!) I have to say that even writing this is relaxing me enough to make me drowsy and I mean that in a good way. I may get a little nap in before getting up. But I better stop talking about it in case good ole insomnia realises what’s going on.

I do worry about what this lack of sleep is doing to me long term. I always see articles about what lack of sleep can do to your health and I worry it gets in the road of the long life I had planned. Even now I am noticing the effect it has son the way I look. I have permanent darkness under my eyes and I am finding that I need heavier makeup to hide it when I don’t want to look haggard. I am even finding a few grey hairs creeping in and I put it down to being worn out. So it this is happening on the outside then I worry about the inside. Perhaps this is something I need to work on improving.

Anyway, Mini rant over. In short I wish that insomnia would take its self off somewhere else and I might try for a little more sleep.

Sleep well people. 🙂 Thanks for reading.

 

CRPS SOUNDTRACK: Comfortably Numb

 

CRPS SOUNDTRACK: Comfortably Numb

A song by Pink Floyd

 

Ok so I just love this song and when I got CRPS I suddenly understood it on a whole new level. I really relate to lyrics like “Now I’ve got that feeling once again, I can’t explain, you would not understand, this is not how I am”. It’s the feeling I get when a big flare comes along and you try to explain your pain to someone who has no idea what extreme pain is. In fact, according to an interview with the writer/singer, Roger Waters, most people
assumed the song was about drug abuse, or more strangely, Masturbation… Yep!

 

I also relate to the title, “Comfortably Numb”. For me it’s the feeling I get when my pain medication kicks in, the pain eases and I relax a bit. To be honest the doped out feeling can be bliss after such extreme pain. It’s like chill out time that only pain sufferers can understand.

 

According to Waters, the song is about being sick with a fever when he was a child. “I remember having the flu or something, an infection with a temperature of 105 and being delirious. It wasn’t like the hands looked like balloons, but they looked way too big, frightening.” He also stated in a later interview that the present part of the song is about being on tour and thinking he had a stomach disorder when in fact he had Hepatitis and didn’t know it.

 

I am going to post the original video but I would also like to post a cover version by the Scissor Sisters as it is one of my fave covers of all time.  Let’s just say it’s a very different version of the song. Id love to know your thoughts on both versions and what you take away from each of them.

 

“Comfortably Numb”

 

Hello,

Is there anybody in there?

Just nod if you can hear me.

Is there anyone at home?

 

Come on now

I hear you’re feeling down

Well, I can ease your pain

And get you on your feet again

 

Relax

I’ll need some information first

Just the basic facts

Can you show me where it hurts?

 

There is no pain, you are receding

A distant ship smoke on the horizon

You are only coming through in waves

Your lips move but I can’t hear what you’re saying

When I was a child I had a fever

My hands felt just like two balloons

Now I’ve got that feeling once again

I can’t explain, you would not understand

This is not how I am

I have become comfortably numb

 

I have become comfortably numb

 

O.K.

Just a little pin prick

There’ll be no more aaaaaaaah!

But you may feel a little sick

 

Can you stand up?

I do believe it’s working, good

That’ll keep you going through the show

Come on, it’s time to go.

 

There is no pain you are receding

A distant ship smoke on the horizon

You are only coming through in waves

Your lips move but I can’t hear what you’re saying

When I was a child

I caught a fleeting glimpse

Out of the corner of my eye

I turned to look but it was gone

I cannot put my finger on it now

The child is grown

The dream is gone

I have become comfortably numb.

 

And now for something a little different but damn good. Here is a link to the official video if you want a look. I couldn’t post it for some reason.

I hope you are pain free or comfortably numb today. xx

Resources:

http://www.songfacts.com/detail.php?id=1697, Seen 28/06/2016

http://www.songfacts.com/detail.php?lyrics=1697, Seen 28/06/2016

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

 

Hello, Hello. Sorry its been so long!

Hi, Hope your all going ok and for those of you with pain, that it hasn’t been too bad. Im going ok. My pain has been up and down but I seem to have better control over it at the moment. Im really excited to say that I am now an adult student. On Monday I began my Bachelor in Heath Science (Nutritional Medicine). Im on my way to being able to help other people heal through the powers of food.

I have started off with just half of the full work load, and will build up to what I can handle over the rest of the year. I will say that I was petrified at the start of the week when I started Human Biology. It seems so much harder than when I last did it at uni, way way back in 2001. it could have been something to do with the brain fog I had that very first day. Im going to have to save Biology for my good days and hope its a good one when I have my exam.

Im now due for my next infusion and I will be trialing having a one day infusion once a month. I have my first one on Thursday, 14th Aug. I cant wait. The last one has held up ok, but I could do with a top up. Mum is taking the day off to come with me on the condition that we go to Adelaide the night before and have dinner at Raj on Taj in the city. I never say no to Indian food. lol.

I have also started a website for our local CRPS Group. Ill post about it when I launch it. 🙂 We are a special lot here in SA and deserve our own page.

In other news…

WARNING: there will be a full moon on Sunday or Monday, depending on where you are.

You can find out the exact time for you area HERE

So that pretty much it! Ill try to post more. Although I seem to do more when I dont promise to post. lol

I’ll leave you this funny but accurate picture I found, at the bottom of the post and I will say my goodbyes.

Stay pain free people’s xx

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