Faking it!

“Those with chronic illnesses are not faking being sick; they are faking being well.”

This statement is possibly the perfect description of my life living with a chronic and invisible illness.

It was made by Toniele Williams in an article she wrote for SBS, about her experience with chronic pain and fatigue.

Here is the article https://www.sbs.com.au/news/insight/twenty-two-and-living-with-arthritis-turning-on-the-tap-is-pain

I identified with what the writer was saying, for me the fatigue can be so bad I sleep for two days straight. But when I am up and about, I fake being ok because I dont want my pain to be my identity. I am still in pain and exhausted. Its just I have learnt not to let it show.

I thought this was worth sharing. I hope you are all well and pain free. Xx

Advertisements

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

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.

Color The World Orange: ADELAIDE: Nov 6, 2017

November 6th 2017 was the 3rd COLOUR THE WORLD ORANGE day across the globe, Adelaide celebrated by lighting Adelaide Oval, the Torrens Footbridge, the Riverbank Precinct and  the Rundle Lantern in orange for the first time. According to the CTWO website Adelaide joined “Forty-nine buildings, bridges and landmarks in four countries, including Niagara Falls and the fountains in Trafalgar Square in London”

23319249_10157247793073018_860448386360371811_n

Adelaide Oval and Torrens Footbridge lit in Orange for the first time.

As well as the lighting up of iconic Adelaide landmarks, Adelaide also hosted the first information event of its kind in Australia with the aim of creating awareness within the medical and research fields. The event was titled…

CRPS Mechanisms & Management:

What’s in fashion now? 

This event was a great opportunity for Members of the medical field to learn what it is like for those of us with CRPS and this was recognised by the organisers. Members of the CRPS South Australia Facebook group were invited to participate in the night by giving a 5 minute talk on what it is like to live with CPRS. I was happy to be one of the five who took on this challenge (It was a big challenge for me). Although only four of us were able to be there in the end, (that’s CRPS for you) we all explored different areas of living with the condition, but there were a lot of similarities.

Of course there were also talks by the Professionals. Prof Lorimer Moseley spoke of the new findings in CRPS research, Dr Velleria Bellan who was the instigator of the event(thank you) spoke of her research in Untangling visual and proprioceptive contributions to hand localisation over time. Also Dr Meredith Craigie spoke of her experience of being both a parent of a child with CRPS and also practising in pain medication and treating CRPS patients such as myself.

Overall the night was a huge success with over 200 people from both research and medical fields, Students and also other sufferers from the CRPS South Australia group. Possibly the best bit of the night was the food and wine supplied and also a GELATO CART!!! Yep that’s right, the event was supplied with a Gelato Cart with all orange colored gelato. YUM!!

A big thank you to the organisers and sponsors of this fantastic event and I look forwards to next years event.

 

 

 

Ketamine, Coffee, Food, Family and Student Doctors!

Ah Ketamine. I just love it! Its been two weeks since my trip to Adelaide for my three day infusion. It was a great trip. I went with my second family, Steff, Phil and Amity. It was a great trip even if I did sleep for most of it. We travelled to Adelaide on the Monday afternoon and arrived in time for dinner and had the best Indian food I have ever had from my fave Restaurant Raj on Taj in King William Rd. I have not eaten there in years and it was divine. The next day I had my first day of infusions and I pretty much slept through the whole three days. It went really quickly. Basically my whole trip went much like this… Ketamine, Coffee, Food, Family and Student Doctors!

The weather during this trip was Hot, rainy and humid. It was a shocker and it did raise my pain for the first few days, but by the end of the three days I was feeling good and my pain was at an all time low. It was so nice. Steff even noticed how my presence changed as I came out of the pain. Each morning I was driven to the hospital by Phil who then returned to pick me up that afternoon. The staff in the pain clinic naturally thought that Phil was my Dad and I soon realised that there was no point correcting them. Having fasted each morning and being in need of a good coffee, I introduced Phil to my fave café, Cibo on Rundle St and I got him hooked. Each day we would grab a latte and I would spoil myself with a yummy pastry. If I move to Adelaide I’m scared that I’ll be the size of a house because I love the pastries so much. Yum! After my infusion we would normally relax before going out for dinner and eating fantastic food and I even snuck in a glass of wine when I felt the need. Not sure if that was a good choice but one couldn’t hurt. Lol.

Aside from all the food, two really exciting things happened while I was having my infusions. The first thing being that I got to speak to student doctors about CRPS! On two of the mornings I was asked if I was interested in having a chat with some fifth year student doctors. I was really excited to be able to make around fifteen future doctors aware of CRPS. The average diagnosis of CRPS is made after four years of suffering and most doctors never see or diagnose CPRS so I knew that this was a great opportunity. The students were equally excited to chat about my experience and treatment as well. I decided to be really open with them and the students on the second day really got into my story. It was a smaller group and we were chatting for near an hour and made my infusion run way over. I didn’t mind though. I hope I can have the opportunity to do it again. Hopefully someone will benefit from my sharing my story.

On the last day of my infusion, I was in recovery and chatting with a nurse about the mental strain that CRPS puts of you when she asked if I had seen anyone like a psychologist. I told her about the lack of care I had received from being in a rural area. The next thing I know she is off to ask the clinic psychologist if she could see me while I was in town. The next day she fit me in and it was great. We basically started by chatting about what has happened so far, who I am and how I am coping. Her main concern so far is my lack of sleep and how it is affecting me. I have started on Melaton and will be doing a three month trial to see if it helps. I will now do a phone session every three weeks and meet at the clinic when I have appointments at the hospital. Mostly I’m hoping that I’ll be able to improve my outlook on life and living with CRPS. Already Im looking at what I could be doing to move forwards and not make CRPS my main focus in life. It can’t own me but I have been a little stuck trying to sort it all out on my own. Things are looking up!