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

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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

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.

 

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?

 

 

 

ILLNESS IN FILM: The Punk Singer

Lying awake, It’s currently 4.15am and I’m stuffing about on YouTube. I just remembered a film I saw a while back during a shitty day where I was stuck watching TV to distract myself from my pain and generally feeling like crap. At first the awesome music draws me in, but then the film takes a turn that really connects with me.

The Punk Singer is a film about Kathleen Hanna, a singer from bands such as Bikini Kill and Le Tigre.  Not only is she a great musician, but also a pioneer of the feminist punk Riot Grrrl movement. (1) She also suffers from Lyme disease that triggered by bacteria spread by tick bite.

Lyme disease manifests as a multi-systemic illness that can result in symptoms affecting random parts of the body including the muscles, joints, organs, brain, gastro-intestinal and neurological systems. (2)

Kathleen’s struggle with chronic illness is honestly documented in the later part of this film. For me, it really represented a true depiction of what I feel living with chronic illness in general. Unlike the Lady Gaga film, that probably unfairly left a lot of people feeling kinda betrayed by the way her Fibromyalgia was shown. This film is honest and raw. There is no glossing over how shitty she feels and the lengths she goes to, to find treatment. It’s brave and real and that’s why I thought I would share it on this site.

Also the music is awesome and has some great musicians in it. Unfortunately I can’t get the whole film so here is the trailer…

Here is a clip from the film that focuses on Kathleen dealing with her condition. The sound is really low but beggars cant be choosers and all that…

I hope you are able to find this film in its entirety. Its a great film and I hope you enjoy it.

I hope you are feeling well, pain free and all that. xx

 

(1) https://en.wikipedia.org/wiki/Kathleen_Hanna seen 24/08/18

(2), http://www.lymedisease.org.au/about-lyme-disease-2/ seen 24/08/18