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?

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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

Summer Survival: CRPS & The Heat. 2019!

Oh lordy, it was hot this summer. So hot that here in Adelaide records were broken. We had a day that was 48.6C (115.9F) freakin degrees. That day was so extreme that it made all following 40C (104F) days seem not so scary. It was Adelaide and any Australian capital cities hottest day recorded. Port Augusta, 300km to the west even hit 49.5C (121.8F). In short, it was crazy hot this summer. So add to that having CRPS to deal with in the heat of this summer, it wasn’t a great one for me.  My house is well insulated and was cool most days, but we did have a few nights where I moved outside and slept on a blow up mattress with my cat and my housemates bunnies so we could all cool down.

Besides the usual CRPS shittiness, anytime the heat gets near 40C my body shuts down and I am basically a vegetable until I can cool down and function again. Also, towards the end of summer and the lead up to my recent round of Ketamine infusions, I spent most of my time sleeping through some shocking fatigue. Just an hour or two of being out of bed and doing something gentle was enough to knock me out for a day and a half to recover. Its such a crappy feeling when you literally sleep through life in general and its suddenly a month later. But lucky it was only a month and I still got to enjoy the rest of summer… Of course though, my month of fatigue just had to coincided with the Adelaide fringe… FML! I did make it in on the very last nigh to celebrate my birthday and I was pumped (ketamine the day before helped) and then bummed because it was over for another year. But one night is better than none.

So here are some of the ways that I coped with summer this year.

1, A FAN. When I was awake, I spent a lot of time on my bed with a fan on me, which isn’t ideal for CRPS and my skin sensitivity. But as long as I could either cover any problem areas like my feet with  a sheet, or point the fan towards the wall near my bed to create air movement without the direct hit, then it was cool… well cooler anyway. lol.

2, A POOL. After talking about it, I was kindly girted a 10ft pool by my amazing landlord after I let people from their bank come in to value the house without warning. I was so grateful for this. On hot days I would go out and sit in the pool to cool down and read. I also put a bag of Magnesium bath salts into the water so I would get some added absorption goodness as well. I’ve talked about the benefits of magnesium a lot on this blog, so have a look here if you haven’t seen it. The cool thing about this pool is it was only $50. It comes with a filter to keep it clean as well. Really any type of pool works if you can handle it. Even a bath or cool shower works. The main thing is to stay cool. In the end, this pool was the best $50 I didn’t have to spend. The water bill on the other hand…

A badly photo shopped picture of the type of pool I have.

3, NETFLX. After not being interested in getting Netflix despite my housemates insistence that I get it because its the best, blah blah blah…. I went in halves with an account with my sister. I’m so glad I did because I was running out of things to watch and I did expect to spend so much time stuck in bed this summer. So even though its not keeping me cool, it’s keeping me from going insane.

4, COLD WATER. If your like me with your CRPS, holding a hot bowl of food or a mug of coffee, you over heat from touching the hot surface. Its so annoying. Well for me, its the same effect with cold water to cool me down. So there are two things I have done this summer that have really helped. I keep chilled water in my fridge and fill my water bottle up with it so I can use it to cool my body down, just by holding it. The other is having a wet face washer or hand towel. by hanging it around my neck or wiping it over my skin, I can use it to keep me cool. I did this on the really hot days and it did help a lot. Its great if you put it in the freezer for a few minutes to get a bit of extra cool happening.

5, PLACES WITH AIR CON. Leaving the house on a hot day really isn’t ideal. But if you have to then do it right. Places like shopping centres, cinemas and museums are always cool options on a hot day. So why not turn a potential crappy day into a good one where you can have an adventure as well. I did this a bit during summer on the rare good days. Mostly it was going to shopping centres and then hanging out as long as I could. I went to the cinema a few times as well. The supermarket over the road from me is always so cool, it actually shocks my body and can be a bit too much for my nerves to cope with. Getting to places was an issue for me as well. I don’t have a car and often walk as much as I can. I do use public transport but its not free so if I have the time and ability, I normally walk to add in some exercise. But, in the heat its worth the cost of a trip to have the air con as well.  If I plan the trip for between 9am and 3pm then the ticket is only 90c for me. I can catch the bus across the road from me, and go to Semaphore for the afternoon. Its a longish trip but the cinema is really cheap ($9) and cool. Plus if I want I can wander the shops, get an ice cream and put my feet in the ocean. Great for days when your able to be adventurous. The dangerous part is the plant shop I walk past (as if I don’t go in. lol.) on my way to the train. Its my favourite plant place in Adelaide. 🙂 Plus they have Parrots, chickens, and an Alpaca hanging out there. Awesome!

So here is how I got through this hot hot summer. It wasn’t pretty, but I survived!

How do you get through the hot days?

 

 

 

ADELAIDE CRPS EVENT: My Speech.

If you read my last post, you will know that I, along side 3 other CRPS sufferers, gave a talk on our experiences living with the condition, during Adelaide’s first Colour The World Orange event on Nov 6, 2017. It was a great event ad by doing this we were able to give the Drs, Researchers and students some insight into living with CPRS.

I decided to participate partly because I felt I needed a challenge because part of having this condition is that it has chipped away at my self-esteem and I felt I needed to push myself somehow to gain some back. I agreed without allowing myself to think about the fact that I would be standing in front of people who knew a lot more about the condition than I do. Add to that my speech became a big issue in the week leading up to the event. Damn you CRPS!!!!!!!

In the end I was so glad I was there and gave my speech. I started out so nervous that I stumbled through the first paragraph and then after that I was fine. After I felt I could do anything, but really what I wanted to do was do it over so I could do a better job of it. lol.

So here is my speech..

Hello, My name is Sarah and I have suffered from CRPS for around 5 years. My CRPS was triggered by a burn incident that left me with second degree burns to my left arm, hand, shoulder and the left side of my face. I was at my parent’s place where my Dad had a fire burning for doing a pre-summer clean up. I didn’t realise that a can of spray paint had accidentally been put into a box of documents that I had the bright idea of throwing onto a fire to get rid of. Unfortunately the care I received at our local Hospital was far from adequate and It was four days before I was sent to the burn unit at the old RAH and by then infection had set in and I was in a bad way.

Despite signs that something was wrong,  it was 4 months before my first pain flare, Suddenly my left hand and arm were swollen, stiffening and loosing movement. I had electric like pain shooting up my arm and down my fingers, as well as a crushing pain in my joints and bones. It was during this time that I started researching online and discovered CRPS as a rare complication of burns. I was diagnosed with CRPS the day before my 30th B’day after I took my findings to my GP.

After my diagnosis the condition took off quickly and within 5 months it had spread into both my legs, and soon after to most of my body from the neck down. My list of other symptoms is pretty long ranging and changes from day to day. These include insomnia, fatigue, forgetfulness, and speech, vision, hearing and motor issues.

Finding other sufferers online and in person locally here in South Australia has also helped me with support and advice that has been invaluable. Alone this is a very isolating condition. Through joining Facebook groups for CRPS, I was able to meet other sufferers in person here in Adelaide and we now have our own group with over 50 statewide sufferers. That’s CRPS South Australia if anyone is interested.

Another turning point was coming under the care of the Royal Adelaide’s Pain Unit. At that point, I was losing strength in my legs, my flares left me bed ridden and I was a general mess. At the pain unit, I soon started having Ketamine infusions for 3 days every 3 months and although the first time the relief was delayed and short lasting, it did quieten down my other symptoms. A friend with CRPS had advised me that it might be this way and to not feel disheartened if change wasn’t immediate. By my third round was having lasting effects and slowly with each infusion I have gotten more control over my condition. Aside from Ketamine, I treat my condition with Lyrica and Tramadol on a daily basis.  

I have also found that gentle daily exercise helps keep my pain and symptoms in check. I walk, use a stationary bike and do a mix of small weights, yoga and Pilates. This year I also started riding a bike, something I previously couldn’t do.

I am also a big fan of adding Magnesium to my bath about once a week. I find it relaxes my muscles and helps calms my pain to a level I can deal with, especially when I have over exerted myself.

There are things that I have found hard about having this condition. Initially it was hard explaining my situation and seeing the look of doubt or confusion in people I care about, Sadly I also found myself with only a few friends left.

Now after 5 years of CRPS, for me the fatigue that comes with my CRPS is the most debilitating part. I am now working a few hours a week, and to do that I need to plan my week around the rest I need before and after each work day.

Health wise, I have been diagnosed with type 2 Diabetes, an underactive thyroid and high cholesterol since my crps diagnosis.

Mentally the condition has been a struggle with periods of anxiety and depression, I have mourned over the life I have lost and struggled with losing my independence. For a long time I wondered if there was point to life with this horrible condition, especially if it stopped me from living a meaningful life. But in a lot of ways I have also been very lucky.  

Despite the negatives of having this condition, there are positives. Including the fact that I have responded so well to the treatments I have tried, the friendships I have made through this condition and the progress I have made in the past 5 years.

I have benefited from a positive living environment at my parents’ house, in the country where It is quiet; I have my cat and my dog for company and my two horses who get me out of the house each day. I have a veggie garden to potter about in on good days. Plus I am close to the beach.

Having a positive attitude is also essential for getting through this condition

I try to treat the 3 days of my Ketamine infusions as a little holiday from my CRPS where I can rest and catch up on my sleep, as well as being looked after by the wonderful staff at the pain unit. I have also had the opportunity to speak to student doctors touring the ward about my CRPS

Having a team of Doctors, specialists and practitioners who support me is essential to my care and initially that wasn’t easy. I now drive 100km to a GP because I wasn’t the help I needed in my home town because they did not understand the condition. That is why I feel events like tonight are so important.

Thank you all for listening to my story and for educating yourself about CRPS. Good night.

Victorian (AUST) CRPS GUIDE BOOK

Its hard navigating your way through CRPS and scary as hell when your new and totally have no idea of what to do next. The lovely Danielle from RSD CRPS Victoria Australia has created a thorough Guide for sufferers of CRPS in the Aussie state of Victoria.

This insanely thorough guide can be downloaded from the page (link above) and Danielle is keen for the guide to become a guide for other states if someone is willing to take on the project. This is something I have been wanting to do for my state of South Australia.

Imagine if we could have one for each state in Australia, New Zealand, The US and The UK. Anywhere really. Imagine how you would have felt if way back when, you were able to access a guide that told you off all the appropriate resources available in your area. I know that this is something I have been wanting to provide along with other projects that will bring awareness to our cause.

One day we will be as normal and understood as people with other Neurological problems. I cant wait! xx

RESEARCH PROJECT: Aussie CRPS Sufferers

This is something worth sharing for any Aussie sufferers out there. This came from the Australian Pain Management Association’s Facebook page. I’ve sent in for some more info. Lots of research happening in Australia at the moment.

Australian Pain Management Association 

RESEARCH PROJECT: CRPS. If you have Complex Regional Pain Syndrome (CRPS), you are invited to take part in a project to examine the impact that CRPS has had on your life. The researchers will investigate what it’s like to live with CRPS in Australia, what the impact your condition has on your life and that of your family and health goals. The research will identify strengths and weaknesses in current practice in Australia and will identify areas for improvement and reform. If you’d like to receive more information about taking part, please email secretary@painmanagement.org.au

IN THE MEDIA: Chronic Pain, 7.30 South Australia

“It is a common condition, patients suffer from it, doctors treat it but Medicare doesn’t acknowledge it. It’s chronic pain. But what causes it and why do traditional drugs seem to have little effect?”

pain 730

This is the introduction to a news story that was shown on our state edition of the Current Affairs program 7.40. Its really exciting that this show has done a few stories on Chronic Pain already this year and although not exactly about CRPS, It still relates back to the treatments and the health system that I and many other Australians rely on.

I posted about the first story here. Australia’s Pain Epidemic

This story by Mike Sexton and shown on 7.30 South Australia, on Fri, 21 Feb, 2014.  Duration: 6min 13sec. It starts as stated above and then leads into some horrifying, yet unsurprising statistics that Medicare (Australia) has found that up to 5% of patients in Gp’s clinics are seeking relief from Chronic Pain. It again mentioned that most Australian’s suffering from Chronic Pain wait 2-3 years for a placement in a pain treatment facility. This leads to Gp’s prescribing more and more opioid pain Medications and leads to dependency. Clearly there is a cycle here that must be broken.  I’m hoping that the Website will post a manuscript to this story as it has done in the past so that I can post it.

One exciting thing bit of information that I learnt from the story is of a local research project happening right here in South Australia at the Bionomics Facilities in Hindmarsh, is a focus on Ion channels and their role in Chronic Pain. The story went on to report of an investment of 170 million dollars (Aust)  being made into this study by Merck & Co. That is pretty exciting really. I went onto the Bionomics Website and found the following:

“Bionomics has entered into a collaboration with Merck & Co. to develop a novel oral treatment for chronic pain. Chronic pain is a severely debilitating condition with a large unmet medical need. Current analgesic medications which include anti-epileptics, anti-arrhythmics, opioids, NSAID’s and anti-depressants, are either ineffective, associated with a range of dose limiting side effects or have the potential for abuse and addiction. Our novel treatment which is expected to deliver greater efficacy and safety than existing pain medications is directed towards an undisclosed target that has been strongly linked to chronic pain in humans.”

www.bionomics.com.au/research-development/pipeline/cns-central-nervous-system

Well Im off to investigate further and see what else I can learn about this trial and even if I can participate in any way. 🙂