CRPS Awareness photo challenge: my firey flaming CRPS ribbon

Day 25: to design something with the awareness ribbon on it.

I already created something simple earlier this month (which I haven’t got round to posting yet because I was running behind on the challenges) so I got stuck into the challenge this time creating a CRPS orange ribbon from a pic of fire as fire is often used as a symbol of the CRPS burning pain. Although there is also the icy burning pain as well as the deep bone pain and more, but the flames are a recognisable shorthand symbol in the community of CRPSers and their carers.

I’m uncharacteristically proud of my flaming ribbon creation! X-) It turned out better than I thought it might. So I went on to cteate this shareable poster from it. Hope ya like it. 🙂

Flaming ribbon info poster- photoshop saved

Whaddya think? Will it do?

I really enjoyed creating this. 🙂

x

CRPS Awareness photo challenge: fear and coping

Today’s challenge is to post a quote which has helped me cope. This little gem of a quote is from the book ‘Dune’ by Frank Herbert.

Fear is the mind killer

It gives us a choice in the face of bad things. We don’t have to accept being flattened by our circumstances. Changing our response to fear gives us back some control. We can feel our emotions but we don’t have to be overwhelmed by them.
The kind of life changes that result from chronic ill health have been described as a kind of drowning.

This quote suggests we can get through this. And we can. 💜

x

CRPS Awareness photo challenge: regained

Suzy's photo challenge, 2015, day 11

Something I never thought I’d do again.

A bit tricky for me as if I find I can’t do something any more I don’t think “that’s it, I’ll never do that again”, – I accept that I can’t do that for now but I don’t write everything off entirely. That would be a very defeatist approach which I avoid because that’s enough to make anyone prone to depression. Besides, this neuro condition is all about change. Some changes can be positive. So there’s nothing important that I’ve written off that it turns out I can now do again during physio time. Except for… grating cheese and rolling pastry!

Heh!

The important things that I had to accept as written off are few but sadly they still stand.

But at least I can grate cheese again, right?!

x

CRPS Awareness photo challenge: happy

Something that makes me happy even though I’m in pain: nature aka The Great Outdoors.

Suzy's photo challenge, 2015, day 4

 

Also, cute babies and smiling dogs feature on the list as well! X-)

CRPS Awareness photo challenge: a pain aid

ScreenShot00170

(source: a screenshot of the loading page on my laptop)

Role Playing Games (RPGs) are helpfully immersive and so make a brilliant pain distraction tool. These are more helpful if they don’t have lots of decision making in them as people with chronic illnesses make lots more decisions throughout each day and so run out of neurotransmitter chemicals far quicker. Fortunately most modern games allow roaming and choice, so we can choose game activities that can help to distract us without having to deplete our brain even more.

My recovery game is the Lord of the Rings Online.

x

Losses and hope

There’s a photo challenge running this month for CRPS awareness. Yep, Nervember has come around again and I’m sporting my orange awareness ribbon on my bag and have matching ribbon lacing my knee-high boots just to make it stand out more. Every year I’ll get asked about it and that’s the whole point. Raising awareness amongst people who wouldn’t come across the information otherwise. 🙂

One of the challenges is to post a poem or quote which describes the losses I have experienced as a result of CRPS impacting my life. And the very next day the challenge was to post a picture about hope.

The losses challenge resulted in me just writing from the heart, that bit was natural. The hard bit has been making myself post it.

The list of losses are initially from way back (I’ve come a long way in knowledge, pain management and personal growth these 16+ years) and the last loss is just 5 years ago (please don’t worry – I’m coping. The last line is less severe these days as I have worked to find new meaning in who I am. I am still grieving, but also living again).

Losing so much as a result of an acquired turn of health is enough to make anyone depressed but CRPS is known in the USA as ‘the suicide disease’ because without diagnosis there is no treatment, no support and crucially no understanding for a patient who has mystery pain which doesn’t make sense. People just want out. It’s too much. Too relentless. Often with no answers.

But loss of neurological function is different. It’s terrifying when you find out what’s happening but before that it’s just confusing. Everything is confusing. Basic conversations become really difficult because you just end up guessing all the time. And then you try to reply with something which hopefully is on the right lines to make some sort of sense. The likelihood of misunderstandings beginning and continuing is frustratingly high when we’re going through this.

Loss of family is so common for CRPS patients that it is surprising (but wonderful) when we meet a fellow patient who hasn’t.

It’s so hard to rise to the awareness month challenge and post this. I don’t like to focus on the old losses and I still struggle daily with the latest one. Egads! Okay,
here goes…

Suzy's photo challenge, 2015, Day 6

 

And because I can’t end this post on that note, here is the post about how I eventually managed to find myself and start to re-build my life:

The way forward for me after the greatest loss was to find who I am at my core. I had to anyway because loss of family meant a large part of my identity was no longer there. So I had to rebuild with me at the centre instead. It felt very alien to do so, and was rather like a rollercoaster ride but it was worth it.

Knowing who we really are at our core is one thing but having our identity built on that alone is quite another and it allows us to live that core openly and comfortably every day which results in a sense of peace and a kind of improved emotional suspension system which smoothes out the bumps. When we are truly ourselves resistance falls away. We can just be, because when our identity is rebuilt on who we truly are (instead of where we come from, who our family is, what others think of us, what we do/did for a living, societal role expectations and so on) there is no resistance. There is just us. Other’s opinions may affect our emotions but our sense of self is no longer affected by them. And from that point life kinda opens up. 

Suzy's photo challenge, 2015, Day 7

 

xxx

 

 

Yes I still exist (honest guv’)

Imagine my surprise when I realised I hadn’t written a blog post since the end of last year! Lawks! I’ve been writing drafts when I can but poor ole Betsy the laptop has usually (always) got too many browser tabs open to cope that well! How is it possible that time passes by so quickly these days?!

I have been posting on the Facebook page though of course. Just never seemed to get to complete a blog post. The main reason has been lack of Brain. It pops in now and again but it doesn’t hang around as long as it used to. So I realise I need to change my way of writing to accommodate this change because mostly it’s resulted in me not writing. And as writing has become a love of mine I have been getting twitchy!

As I’m in the UK I was initially dealing with the tail-end of the continuing coldness through the Winter. Always a toughie getting through to the Spring, eh? Pain levels are up, natural vitamin D intake is down, relentlessness is the name of the game and by the end of Winter (well deserving of it’s capital W) we are begging and pleading the weather to bring Spring to us so that we can start recovering.

Winter was actually pretty mild here, but that just means that I wasn’t at quite such an extreme of my wits end, y’know? Winter is *always* hard. Springtime rocks!

I’ve been having some more health issues and I’ll write more about that in due course, but initially it appeared like it was a crazy-arsed allergic reaction to anything / nothing / everything which lasted all the time / 4 random minutes at a time / stopped for a few hours then came back with a vengeance. It was pretty weird. And yes it became apparent that it was so bizarre that it was reminiscent of my respiration issues a few years ago, so I knew it was a systemic overload which had to be stopped. Hence.. more on that in a separate post.

In March I said “yes” to a concert because I figured how could I not? I mean, it was in Winchester Cathedral, maaan! Beautiful! I didn’t realise just how cold it would get in there or that I should’ve dressed for the outdoors to better manage my pain levels, but fortunately they had some doghouse sized radiators to cuddle up to! So yeah, I went and saw Anathema perform acoustically in a gorgeous cathedral. It was stunning. Truly fabulous.

There are a few cathedrals around the UK who raise some of their funds through events like this so if you get the chance… dress warm, take a cushion if you need one, and because it’s acoustic it’s not like you’re gonna get your head blown off by mega-speakers so the volume is more compatible with sensitive ears (though if you’re unsure I can recommend the noise-reduction earplugs as they reduce the volume without muffling the sound).

Winchester Cathedral acoustic concert, Anathema

How stunning is this?!

 

I’ve also had the wonderful experience of two fellow CRPSers travelling from their home countries to come and visit me in real-live-3D, wow! That will also be a separate post because it was so fabulous 😀

Two of my friends got married and Magic Dude and I attended the sci-fi wedding in Star Wars fancy dress. Which I made with my own fair hands, I might add! My sewing machine and I are no longer nemeses, we have made friends and now I wish I had more time during which I am more functional to make some clothes. I now have a new creative project with the sewing machine which I’ll post about soon, too.

And for anyone wondering… I am dressed as Jareal (after the make-up has come off and been re-applied a gazillion times X-) ) who I found out about by researching the comic characters, and Magic Dude is dressed as Plo Koon who was briefly in one of the prequels (very briefly – when asked about his choice of wedding costume he said something like “you see him in one of the spaceships for a moment and then he dies”).

And of course that same month we had the UK government election. Voters were at a loss who to opt for if they even voted at all, many didn’t. The ‘majority’ on our ‘first past the post’ system was a shock. The majority means the party who got the most votes, even though the people who voted for them are actually in the minority of the voting population. Even weirder, our system is set up for the main parties and to keep smaller parties at bay. So this means that votes for the Conservatives adds up to more MPs from their party than exactly the same number of votes would get for another party. I know. Don’t ask. It’s so out of date. Anyway the shock factor was massive. No-one expected the same government to be voted in again. Not even the government peeps themselves! Many of my disabled friends were in tears at the news – welfare cuts have been horrific here with the poorest and most vulnerable getting hit multiple times through different cuts. The new welfare ‘assessment’ process is causing mental health issues to the extent that there have been suicides as a result. Before getting re-elected the government promised a further £12billion welfare cuts so you can see why so many people were in tears. I seemed to last a while in shock until Magic Dude’s Dad said something blinkered and I burst into sobbing and couldn’t stop for some time. The UN is now running a second investigation into the state of human rights in the UK to expand on their earlier investigative report.

So yeah, now I’m an activist. As it turns out. Not just a health activist any more, but an activist for the poor and vulnerable generally. I can’t do much in my state of ill-health but there are petitions I can sign, ideas I can bounce, people I can help. Being chronically ill isn’t going to stop me from caring about others and doing what I can to help reduce the additional shitstorms coming their way. Takes up quite a bit of Brain Time of course, another reason I have been so absent from the blogging as usually May is the time of year when I would begin to manage to write a bit more.

So anyway that’s enough for the body to have to handle whilst still working through the months slowly recovering from Winter, right?

But I’ve also been doing my usual full-on overdoing it for one day in April and one day in June at Tai Chi tournaments. As you know it takes months for me to recover from Winter and weeks to recover from each tournament, so the overlap of tournament with Not Recovered From Winter Yet is substantial. But I do it because I am so limited and restricted every day that pushing myself for two days per year feels worth it because although the aftermath is horrific the memories last far longer. 🙂

The April tournament this year was not the usual nationals in Oxford but my first ever Europeans. (The Europeans were originally going to be held in Latvia and so this was a last minute alternative and much more viable for me to get to).

I performed the Sun Style 73 form which is not a flowery style so I have to show my understanding and skill levels in different subtle ways, so that was my challenge. I also performed the 42 form (a tournament form incorporating 5 different styles of Tai Chi) so performing two different things at one tournament was also my challenge. I was a bit awed that my teacher had put me in the advanced/open section whilst I am still officially at intermediate level, I guess that was also my challenge. Hey wait a minute? How many challenges am I fool enough to take on at once here?!

I was amazed that I ended up with a silver for my 42 form (with two lovely ladies from the Netherlands either side of me with gold and bronze) and a good score for my first ever tournament performance of Sun. But more fabulous was the fact that this was the first time that I’d been part of a larger team. We’ve only had a maximum of 3 of us there before, but this time we had a whole gaggle of us. Some in beginner, some in intermediate and some in the over 55s. Everybody in the team was supportive and encouraging to each other, and lots of fellow Tai Chi-ers there were positive towards us too. In fact I was so pleased to find out that my teacher had been told that her team were notable for their friendliness and positive attitudes. What a fabulous endorsement for her first event managing a larger team. 😀

Tai Chi, 2015, European silver

The next day I met up with my lovely teammate who also has chronic pain and was staying in the same hotel. We have travelled our Tai Chi paths alongside each other these past four-ish years and we have cheered on each other’s progression with such joy because it’s one heck of an achievement in the face of our respective health issues. I hobbled from bed to lift, and from lift to comfy chair in the hotel lobby. I sat in one chair with my feet up on a second, had my hot water bottle under my legs, blanket over the top, painkillers in my bag and he had been his usual sweetheart self and got the coffees before I got there. Several hours later we were still there nattering away. Movement was not very viable for either of us and it was great to be company for each other through the pain levels.

My lovely Magic Dude turned up later with the wheelchair so that he could get me out of the hotel room the following day. We went into Oxford town and I went camera crazy as I always do when I actually get out somewhere! It was really lovely to get to see the city this year. That wheelchair makes such a difference! 😀

Oxford, bicycles.jpg

Pictures obviously included bicycles (and many many grotesques and gargoyles on the old buildings)….

Oxford, Bodleian library

…the inspiration for Hogwarts main school hall in the films (Bodleian Library)…

Oxford, street pianist

…and a pianist on wheels who was super-prepared for any sudden change in the weather! Totally normal, nuthin to see here! (Actually his piano playing was gorgeous).

The weeks between the Europeans and the June Nationals whizzed by and I was not in great shape healthwise (starting the tournament day with the screaming ouchies in my left leg at a mean 8.5/10, boo!) but I managed to get the pain levels down a bit to perform in Sun Style at my intermediate level and got a good score considering I was racing through the 5-6 minute form to complete it within the required 4 minutes *and* I added in an extra move by accident, too! X-) Being able to get a decent score with Sun style was my aim. And extra wonderful was that my teammate (yes, that same friend) got the exact same score for his multiple-style 42 form and so we ended up on the podium together with joint silver, wow! I can’t tell you how awesome it felt to be standing there with my friend sharing that achievement after coming such a long way together in our journey to help our health situations. There really are no words to describe the singing glee in the soul but it was flipping wonderful! He’s put in phenomenal work to get where he is today using both physical and psychological tools to find the best pathway round the health stuff. If anyone deserved to be standing on that podium it was him, and I found myself standing on the same podium with him which felt so perfect that I wasn’t on a different podium or even a different level – we were on there together. Go Team!

I also entered the advanced/open section with the 42 form, managed to fluff it up in amazing style, made it look like it was meant to be that short honest guv’, and ended my performance somewhat (a lot) earlier than I should have, har! A good score considering the extent of my very silly error, and some wonderfully positive words from head judge Faye Yip telling me to come back next year because I have “potential”, yay!

Oh and no wonder my body has been so screwed because the classes that I use for physio’ include adaptive Kung Fu in which I have got my red sash and first level brown sash this year too. I’m not entirely sure how I managed to achieve those! Although the brown grading was during the heatwave and my legs were glad of it even if my nervous system wasn’t! My body needs more tiiiiiime, man!

And yet I posted on my personal Fbk wall the other day that it would be nice not to have to deal with people telling me that I am “lucky” to “not have to work” / “get to stay at home all day” because I get those sort of comments as a result of how people see me when I am out of the house i.e. looking ‘normal’ because I am doing my physio’. If only they could see me the rest of the day eh? Needing a wee and not being able to get to the loo in the adjacent room, wanting a cuppa and having to wait several hours til Magic Dude gets home and can make me one. Ah well, people just don’t get it eh?! 😛

And then we were getting the house ready to put up for sale. It sold at the end of July and we’ve been searching for our new home ever since. Not sure how much longer our buyers will hang in there but if they pull out it’ll sell straight away again. The market here at the moment for the main price bracket of £120-210k (your basic 2-3 bed homes with the usual squished space that we have in UK houses) is basically at about 15 buyers per house. Apparently we wouldn’t have the same extent of trouble if we had £210-250k. Oh if only eh?! Har, dream on!

We need some more space y’see. I moved into his one bedroom place and so nearly everything I own has been in the loft for the last 5 years. If one of us wants to do something creative there’s no space to set it up and leave it so most of my physio’ time is taken up with getting everything out and setting it up and then putting it all away again afterwards which doesn’t leave much time for whatever the activity in the middle was supposed to be (I want to get painting again). So yes we need a little more space but also….an enclosed garden. Currently we only have an open outdoor space between the house and the pavement out the front. Apart from how nice it would be to have some private space the main reason is (dahn-da-da-daaaaah…) we wanna get a dog! But the housing market is slowing down for chrimble so I’m expecting our buyers to pull out sometime soonish and that we’ll be re-selling in January when potential new homes start to show up in greater numbers.

So with fewer house viewings taking up my physio’s I finally have some time again, wheeee! Except for how that creative project I mentioned will now take over any available physio’ time. I look forward to sharing that when all the material has arrived. 🙂

Anyway, now you know I’m still here.

Phew! That was a heck of a catch-up!

Loves xx

Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

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P.S. Here’s a version in multiple languages. Just because. 😉

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CRPS and flu vaccinations

Please note: this article, and the meta-research mentioned within it,
is only discussing flu vaccines

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The question of flu vaccinations in particular has come up recently. This is a very individual decision based on our very individual bodies. Current CRPS research is looking at the subtypes of CRPS, so sweeping statements about all CRPSers are inappropriate. For example, some people experience CRPS spread whilst others do not, some people have other immune issues and/or autonomic dysfunction whilst others either do not or experience few symptoms of these. I could go on, but you get the point – we are not the same simply because we have the same condition.

Everything needs to be considered for our individual body, with our particular array of conditions and symptoms. What is okay for one patient may be problematic for another.

This means that sweeping statements are something to be very cynical about. If someone says all CRPS patients should get the flu vaccine there will be some patients for whom it’s not appropriate. Similarly, if someone says that all patients should avoid the flu vaccine then there are patients who would have benefited who are consequently put at risk. So the first rule of thumb is to steer clear of the sweeping statements.

What you need is facts – so that you can consider your own personal situation in light of the information. You need to be able to make an informed decision.

The difficulty when looking for facts is that most of what we find online is influenced by opinion and to sift through the science you’d need to trawl through many medical journals, (preferably the smaller ones as the big journals tend to publish more of the research funded by pharmaceutical companies which means lots of bias, and don’t forget what I’ve said before about negative data not getting published, too). But helpfully (or unhelpfully depending on how you look at it!) an independent systematic review found that there is no really clear evidence for or against flu vaccines (Jefferson et al, meta-analysis, 2010).

So to make a decision about whether we should have the flu vaccine or not then we should focus on how it works and how that might function inside our particular body.

file0001208028901(picture source)

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A bit about vaccines:

A  vaccine is merely a weakened or dead version of the virus. The flu vaccine has always been a dead version but I have heard from a pharmacist that very recently this has changed as some are weakened rather than dead – so if your body needs you to be sure which your doctor is offering just ask in advance.

They work because our immune system learns from the experience of the weakened or dead version so that it is prepared if we are later subjected to the same strain of the actual virus itself.

The manufacture of vaccines for seasonal illnesses like flu has to begin ahead of time to enable the manufacture of enough vaccine. So the experts have to predict which strains of the virus are going to be the most problematic several months in advance. This of course means that there is room for error, even the experts can’t always predict the next haute couture in flu viruses that far in advance. So there can be strains of the virus around which the vaccines don’t cover.

Ultimately a vaccine allows the human body to have a swifter and harsher response to the strain(s) of virus it protects against. Which is good for us in general terms because immune issues are part of having CRPS (and for one subtype of CRPS may be the foundational factor), but as general terms is not enough when it comes to chronic illness – always look at your own personal health issues to make a decision appropriate to you and your body.

 

One common area of discussion among patients results from experiences of becoming ill after having a vaccination. There are several ways you can become ill after vaccination:

– The vaccine reduces your chances of catching the strain(s) of flu in the vaccine. So the potential for illness if you are subjected to these strains at some point is still there depending on various factors (including the state of your individual immune system).

– It is still possible to catch a different strain of the flu virus which wasn’t included in the vaccine, especially as your immune system will be busy dealing with the vaccine at the time.

Many people think the vaccine itself can cause illness which is not the case as the flu virus in the vaccine is most commonly dead. However, as I mentioned above, there are some flu vaccines which now involve weakened versions of the virus and I feel I should include a caveat here simply because the human body is a complex critter and I have had enough encounters with patients with rare diseases and immune issues to know never to say never! But yes, really, if you got ill after having a dead vaccine the greatest likelihood is that your immune system was rather busy and that you caught a different strain that the vaccine didn’t cover.

Also bear in mind that the vaccination can cause some symptoms reminiscent of the illness for a day or two as the immune system learns about it inside your body.

Plus those of us with chronic illness continuously hanging onto bearable health by our fingertips can become more susceptible to illness during this period.

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Each year new strains of the virus have developed, so a new vaccine for the new strains of flu is created to help protect our bodies against them. This is why we are called in to our doctors’ surgery for a vaccine each autumn.

Sick person

(picture source)

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The vaccine positive: Reduced chances of getting flu. The key word is ‘reduced’, it’s pretty vague because different research has come up with different statistics on how well the vaccine works.

There are various aspects to this, we each have different bodies with our own immune system, does our body tackle this stuff well or not? Is this likely to work for us as an individual? Have the experts’ educated guesses been as good as usual about which strains are going to be the big problems this coming winter? We have to weigh up both sides and decide what’s best for each of us.

Personal vaccine positives: vary for each of us because getting or not getting flu is just the beginning in our chronic illness vaccine considerations. Being what we CRPSers tend to playfully call ‘normal ill’ means that our pain management regime is severely disrupted. We cannot maintain our usual paced daily activity which means that a pain flare is pretty much inevitable. What that means will vary for each of us, and even more so once we start taking our other related conditions (comorbidities) into account because being ill often has a detrimental affect on those, too. So what would be a week of flu for an otherwise healthy person becomes weeks or months of extreme hideousness for us chronically ill folks as we a) work through the flu itself and then b) work through the longer task of trying to get our health back to the level it was before we got ‘normal ill’ on top of our chronically ill which screwed up our delicate balance needed to manage our health as best we can. (Grr)!

We each have to weigh up potential injection-event pros and repercussive cons against the potential mega-flare that will result from having to get through a bout of flu on top of everything else. CRPS patients of any age fall into the ‘at risk’ from flu category courtesy of our compromised immune systems alone, before we even get started ticking off other stuff on the ‘at risk’ list and yet some patients out there could have good reasons to avoid the injection event. Sweeping statements do not apply.

For me personally I avoided the flu vaccine for years and every year I got ill and spent pretty much the entire winter trying to claw my way back to some semblance of functionality again. So I finally tried it (back in 2010) to see how it worked for me, and in my case it was a positive experience. Actually it was a reeaally positive experience because I’ve not had the flu since. Wowsers! Now that I know that, it’s a no-brainer for me! I cannot face the mega-flare that results from me getting flu. I have been through that delightful experience many times and each time it took me weeks, and sometimes months, to get back on track. Horrific doesn’t really cover it. So having tried both sides I now know that I personally would much rather have the vaccine to give me a greater chance of dodging the flu and instead incur a mere few days of potential flu-like symptoms as my body gets trained in kicking the butt of this years virus strain. I’ve had completely transformed winters since I started having the vaccine each autumn. But that’s me personally. You have a different body, a different set of symptoms, a different set of conditions. What works for me or for anyone else is irrelevant, you need to think about what works for you.

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So when people warn CRPSers against vaccinations what are they referring to?

Some of us have bodies which do not favour even such small invasive procedures as one needle. Good general advice is to to have the flu shot in an area unaffected by CRPS. If you are still unsure then discuss the potential difference of using a smaller children’s (paediatric) needle and whether that may be worth a try.

Perfectly healthy people can experience soreness in the area of the injection site so the potential for soreness is there anyway, and possibly amplified pain if our autonomic nervous system is playing up about it.

Elle and the Auto Gnome, notebook

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There are also some basic things to take into account:

If you have any allergies then these should be discussed with your medical team beforehand to assess how appropriate it is for you. There is also a standard list of questions that the nurse should run through with you beforehand, particularly ‘are you allergic to eggs?’.

If you’ve had a reaction to the flu vaccine in the past it is likely you will be advised not to have it again.

If you have an extremely poor immune system you will also need to discuss it with your medical team as you may be advised against the flu vaccine

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Each of us has a good idea about what our own bodies can handle. We know ourselves best. We live inside these bodies of ours and we know what is likely to set off a flare, and if so how bad it could be, and whether we are prepared to go through with that. For me personally, vaccination is well worth the positive outcome I experience from it, but we each have to make our own decisions.

x

Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

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