Advice for living with loved ones in chronic pain.

I find myself apologising a lot for getting injured, for being unable to do simple things, or even just for feeling worn out because of pain. I sometimes struggle to communicate what I really mean. I’m not necessarily apologising because I think it’s my fault. I’m more apologising because I’m not successfully dealing with it. This site is useful, it was shared on a support website that I’m on, and it’s made me think.

https://www.naidw.org/groups/viewdiscussion/1195-23-tips-for-men-on-supporting-a-partner-with-chronic-pain?groupid=25

I don’t like the “men supporting a partner” because it furthers the misconception that only women suffer from chronic pain disorders. That’s not true. Things like CRPS and Fibro are more common in women, I believe… but men have them too.

Anyway, I often feel like the pain is “mine”. It’s a part of me that I can’t walk away from, while everyone else can. It’s tiring and exhausting but I can’t make it go. I’m often reluctant to share the burden of the pain, and bottle it up. I know my partner knows I’m in pain, but I don’t sit there and whine about it a lot. I talk about my pain and injuries, but I don’t think that’s the same thing.

Right now, after an afternoon of hunting through job sites and finding *one* job that I can reasonably apply for (excluding my ever-hopeful PhD application), I feel worn out. I want to crawl into bed and sleep for a few hours and it’s only 5pm. My throat’s swelling up too, which isn’t a good sign.

I’m so exhausted. Someone come find me a job?

Sharp teeth + fragile gums.

I have very pointy strong teeth, and my gums, tongue and the insides of my cheeks are very fragile so rip easily. I am guessing this fragility may be HMS related, but I’m not sure. When I am stressed, I seem to kind of chew the inside of my mouth too, which makes it worse.
I always used to use Rinstead pastilles to deal with it. They are designed to deal with pressure sores for people with false teeth really. They seem, however, to have been discontinued.
I have tried using bonjela too, which is a baby teething gel, but it just doesn’t last long enough.
I went to the pharmacy yesterday and asked for advice, and was offered these…

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They don’t taste as nice as the Rinstead ones, which tasted like fake cherry flavour, but these have a greater numbing effect. I have only had them for a day, but they are excellent.
I also use a high alcohol mouthwash (which burns like hell) but it keeps the cuts cleaner.

I signed on for job seekers allowance today. The advisor who assessed me was really understanding about my HMS/fibro and put restrictions on my account, so they can’t send me too far for interviews, send me for placements that are less than a month, or make me work anti-social hours. That means that they can’t make me work alternating shift work, which is ace. My next meeting is in two weeks, and I have been told I will probably have a meeting with the disability bloke so he can advise me on how to job hunt with a disability.
I am still working on the PhD application, but it’s 4 weeks ’til the interview date for that, so it is a long wait. The kind of job I’m after tends to have long gaps between applying and interview. It also seems they are mainly applied for by people who already have jobs, but are looking to “upgrade”, so I guess the long waiting period helps them.
Time for lunch now I think, then job searching, finding out where to go for housing benefit (and if its worth applying when we are moving in two weeks) and council tax, PhD personal statement and academic CV, laundry, and if I get time, watch Eastern Promises starring the incredibly talented Viggo Mortensen as a highly tattoo-ed gangster. It is available now on BBC iPlayer.

That’s not even taking into consideration the packing, changing the addresses on bills and stuff. We have at least started packing!

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We have a lot of books! We heard back on the contract for our new flat. The owner of the lettings agency is dealing with it personally, thank heavens.

So much stress and not enough cake.
*tired hobbity yawns*

Knackered

Today I have found out that the online jobseekers site hates me and won’t work. I called the helpline, and they told me to use the phone application. I phoned up, and they said that you can’t apply by phone anymore…
Genius, eh? I mentioned I’m on crutches, and they took pity, because disabled people can use the phone application. It took roughly an hour on the phone. We now have a meeting or interview thing on Thursday.
I also called the doctors. They have a reference number for my referral, but something is wrong with it. Basically I should have been given a phone number to call and I wasn’t. Waiting for a call back on that one.
I have also hunted out all the paperwork I need for jobseekers. I found some old bank paperwork, so need to arrange an appointment at my local branch to see if I can reclaim the money.
My partner has phoned up the lettings agency about us moving house, so we now know the address, but still no contract. Waiting on a call back for that too.

Broken, tired and we have no milk for tea. 😥

I have however started my PhD application, and have a meeting with my careers advisor tomorrow to polish the application. Got to finish that tonight.

Need a hug, tea and sleep please?

Update!

My knee is still totally busted, and I’m managing the pain with a combination of rest, paracetamol, zapain and ibuprofen. I’m still on crutches to walk far, which isn’t good as it’s damaging the rest of me a reasonable amount. My thumbs still haven’t recovered from the job interview trek, but at least it’s the left one causing problems, so I can still write.

Our house move is being faffed around. Our lettings agent hasn’t written up the contract yet and we’re meant to be moving in just over a fortnight. They’ve also been messing us around with a viewing on our current flat. I swear, this group of lettings agencies are staffed by a special brand of moron who just like causing difficulties. We haven’t started packing yet because we’ve not signed a contract. Also, on the day we move, I’m meant to be going to a volunteering library thingy. I guess with a busted leg I might not be much use anyway. We have had an offer or three of people who will help which is nice.

Other than that, the PhD application is coming along nicely. I’ve got a meeting with my careers advisor on Wednesday to go over the details, and I’ve got to submit it by the 8th. I’m thinking of signing on for Jobseeker’s in the meantime, in case they can find me something to do, but also in case I don’t get the PhD. I’ve been job hunting for well over three months now, and nothing’s been successful yet.

Oh, and outside our flat, there are dogs going absolutely mental. I hear them barking and howling, and then I’ll the owners (or neighbours) shouting, then a whine and whimpering. It doesn’t sounds good. The problem is, with the RSPCA and so on, you actually have to know the exact address of the place, and see the dogs/animals being mistreated, so instead I have to sit here and listen to this.

There should be some kind of test before you’re allowed near animals!

So… to brighten up this slightly gloomy post… here’s a zebra mouse.

Cute, eh?

*hobbity hugs for all*

CRPS patients and dentist appointments

Elle and her Auto-Gnomes with great advice for visiting the dentist when you have a complex medical condition (like CRPS, EDS… etc)

Elle and the Auto Gnome

Many patients ask for advice about what they should say to the dentist about their CRPS. Some dentists have come across patients with neuropathic pain, but may not be familiar with the extent of involvement of the central and autonomic nervous systems in CRPS. Or of the possibility of CRPS spread after dental treatment without sensible precautions.

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(picture source)

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So here’s a list of helpful tips for you and your dentist to reduce the nervous system response to treatment…..

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– Relax the central nervous system beforehand if possible (e.g. laughing gas)

– DO NOT use anaesthetic with adrenaline/epinephrine in it (because our ‘fight or flight’ is wacky enough already, making it even worse is to be avoided)

– You may require more anaesthetic than our healthier counterparts out there. Particularly if you are also hypermobile, ‘double jointed’ or have been diagnosed with Ehlers Danlos Syndrome (EDS). (The…

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Not as broken as I had expected.

I thought that being refused from that job would have really knackered me. To be honest, I thought the interview day alone would kill me. I looked at my pedometer when I got home and I’d racked up over 13,500 steps. On crutches! And 2 hours on buses, and a taxi ride. And that’s without getting through to the afternoon “second shortlist”.

But… I’m still doing O.K.

Maybe it’s to do with the fact my partner picked up all the pieces of me and put me back together. 

I walked from the interview to the bus station, which should have taken 15 mins. It took closer to an hour. Then I got the bus, which took about an hour, and met my partner in the centre. My new interview shoes had started rubbing, but I had , being the genius that I am, packed my trainers in the bottom of my interview rucksack. (Handbags don’t work so well with crutches!) I sat on a bench in the middle of a very busy Nottingham, and rolled up my trousers, pulled off my Tubi-grip with minimal swearing, ripped off my shoes and swapped them over. I got a few strange looks. 

I struggle with Tubi-grip because I have slim(ish) calves, and HUGE thighs… so it’s impossible to get the size right. It either isn’t tight enough on the knee, but comfy on the thigh… or it cuts into my thigh and rolls down, but supports the knee well.

So, after I’ve put my trainers on, packed stuff up, and made myself look human, my partner arrived. He had brought a big bottle of water, which was wonderful. There’s also a “Riviera” going on in the center, which is basically a fake-beach for people who are nowhere near the sea.

The lunch provided by the interview people had been some very questionable sandwiches – cheese and tuna (but not in separate sandwiches) and something grey that tasted a bit like stuffing. I’m told it was meant to be coronation chicken. 

We are meant to be saving money, but I smiled sweetly at my partner and he agreed that a hot-dog from the Riviera BBQ stand was a very good idea. We sat in the sunshine and just relaxed for a bit. He even pulled a Digger bar out of his bag (chocolate digestive bar from Aldi!) so I could have lunch-dessert.

When I got home, I cleaned myself up from all the anxiety and pain related sweatyness, was given a cup of tea and promptly fell asleep without drinking it. I drank it when I woke up, but cold tea isn’t that nice. I was just thirsty.

I was awoken at some point with dinner – Lamb koftas with cous cous and salad. We sat and watched comedy for most of the night, and had the BEST chocolate cheesecake with a few glasses of red wine.

Despite having a painful, difficult, tiring and sometimes downright embarrassing day… (I’m still no good at the whole “accepting help because I’m disabled” thing!) I still felt ok at the end of it. 

I suppose this just goes to show that so long as you’re surrounded with people who give you the right support, you can deal with anything. Even sucky interviews when you’re on crutches!

My current list of injuries and pain is a little longer than normal, but not half as bad as I had expected. The crutches have done a number on my hands, mainly my left wrist and thumb. Right leg is still in pieces, and my left leg is getting worn out where I’m constantly leaning on it. I think I’ve damaged my left ankle too – it feels *wrong*. On top of that, there’s the tension in my back and neck that won’t go, but that’s probably anxiety about the impending house move and lack of a job.

Ah well, as Dory says… “Just keep swimming!”