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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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

FULL MOONS and PAIN

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Something that I noticed early on in my life with CRPS and Chronic pain was that my pain and other sufferer’s pain would always rise during a full moon. I’ve always found that a Full Moon effected my moods and sleep so why not pain? After all how do you also explain our pain being greater at night than during the day? Isn’t it equally plausible that the moon cycle could effect us in a similar way?  I did a little research and found that I might have been on to something.  I read how people with arthritis often experienced more pain around a full moon and that epileptic’s had more seizures.

I am in an Aussie and Kiwi Facebook group that chats on a daily basis and it was due to us all being sick with pain flares and my noticing it was always a Full Moon that all of us were online complaining of a shocking flare. So for the next few months I didn’t allow myself to know when the next full moon was unless we were all syncing our flares again. After all its only natural for women to sync up. Lol. Sure enough there was a pattern and over time even the non-believers in the group now whinge about Full moons. Especially one person in particular, who bullied me for my theory and is now the first to announce the arrival of a full moon as if it was him all along who brought it to the group. Oh well!

TODAY 14th MAY 2014 IS A FULL MOON HERE IN AUSTRALIA

Basically it’s all to do with Ions in the air that are either positively or negatively charged. During a Full Moon the air is positively charged and this causes a hormonal reaction in our bodies.

“Ions are floating in the air around us all of the time and have either negative or positive charges. Changes in their concentrations or in the ratio of positively to negatively charged molecules can have remarkable effects on plants and animals. It is known in science that ion depletion is the source of a wide range of human health problems, both mental and physical.

These air ions are important to you because if they have a high proportion of negative ions in the clusters you will feel lively, uplifted and enthusiastic. Too many positive ions in the clusters will have you feeling depressed, lethargic and full of aches, pains and complaints.”

Read the full article at www.quantumenergywerks.com

So what do you think?

I hope the Full Moon is kind to you. xx

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

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

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

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

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

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

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

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

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

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

PAIN SCALE: Here is a good one.

I found this fantastic Pain Scale the other day and thought that I would share it with you all. I do not know where it originates from but it is too good not to share. I have in the past found it hard to find a good definition of each level of pain. For my own pain diaries that I have been asked to keep by my Doctors, I have merged many together and made do with what I had. I like that this one justifies what is minor, moderate and severe pain.

PainScale

If anyone knows where this chart originates than please let me know. I like to give credit where credit is due. 🙂

MEOW: My cat is the best medicine

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Ok, sure her purring and weight isn’t ideal on a bad day where even my clothing can hurt my poor body, But I love my little girl and the comfort that she gives me is worth that extra bit of discomfort. I’m in pain anyway!  On a not so bad day, I feel blessed that I am “worthy” of her cuddles. Yeah, any one with a cat knows what I mean by that! On nights when I’m flaring Molly will come to bed with me or climb my window screen until I hobble out of bed to let her in. She has taken to sleeping next to me rather than on me since I’ve developed CRPS. On a bad day she sticks by me and has taken to leading me to the couch and waiting for me to sit before lightly climbing on. She seems to know before I do that I need to rest. Although, I do think she loves having me there to nurse her all night long.