It’s Crap Feeling Like Crap At Christmas

A friend of mine shared some very wise words this evening and I’d like to replicate and add to them here.

Whatever it is that made you arrive on this page, whether you have a long term mental or physical condition, the holidays can be a little less jolly. The twinkly lights, the parties that you can’t or try to attend but feel on the outskirts, the social or financial worries, any or all of these can feel or appear worse this time of year because we’re meant to be happy and jolly.

For me, it’s Christmas eve at 12.30am, so technically Christmas, and I’m laying in bed with a tens machine strapped to my buttock in the wild hope that it will have the same effect as it did with my shoulder last night where the muscle twitching over the course of a few hours gently manipulated my subluxed joint back in (Whoop! ). Pain sucks. It makes you tired and grumpy and do you know what? It’s OK for you to feel sad about the loss of normality, or the lack of involvement, or just that it hurts. What is not ok is to feel guilty because you can’t put your chronic condition in a neat box and hide it take life easier for others. Invisible Illness can be tough for families and friends to understand and you may find you get a few extra “can’t you just…”, or “have you tried…” comments. People have good intentions at heart.

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Your mental health is just as important at Christmas as it is the rest of the year. If you need to talk to someone & you’re in the UK, call:

Samaritans – 116 123
Mind – 0300 1233 393
Rethink – 0300 5000 927
If you’re at risk of harm please call 999.

Other useful numbers include:

Refuge – 0808 2000 247
Shelter – 0808 800 4444
Police non-emergency – 101
NHS non-emergency – 111

I hope you enjoy the holidays, but if you need help, please reach out either to the professionals above, to family & friends,  or just the many online communities who provide a huge bolster.

However, if all you needed from this post was a refill of smiles, have this Christmas squirrel.

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Handbook for The Recently Decreased

No one really expects to get ill, but when you suddenly go from being in some pain and having some off days to being in unbearable pain every day and feeling like you have a constant dose of flu, seeking out the help you need can feel like it’s actually more hassle than its worth. For some, just trying to get a diagnosis is like banging your head on a doctor shaped wall.

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So, having recently gone through some of the less pleasant processes, I thought I’d list out some of the things I wished I could’ve just been told about instead of finding them out from unrelated internet searches or mentioned in passing from friends. It might just save someone a teeny bit of sanity.

– this is UK related & only from personal experience –

1. Ask your GP to refer you
They aren’t omnipotent, nor are they a specialist. Let’s be honest, you’ve probably Googled your symptoms by now and the best way to confirm it is a specialist. Find a name & ask for a referral (yes, you can choose who to be referred to). Take printouts of what you’ve found & for Ehlers danlos, photos of your joints so you don’t have to perform like a monkey.

2. Don’t be afraid to be an expert
This is your body. Your doctor doesn’t go home in tears because they didn’t listen to you. Take notes – scan every letter and keep copies (Google Drive is your friend, especially with a phone as you can instantly bring up letter and show or quote from them). If you see a professional, ask for a copy of their assessment & keep it in your own medical file.
Take this with you to non-regular appointments. Having records & being on the ball prevents 80% of fobbing off incidents  (stats here are utterly made up, but the really does help).

3. Register with your council as disabled if you are.
This doesn’t actually provide any practical help, but can expedite help if you need it later. All councils are different, but Google “[council name] register disabled” and you’ll be able to download a standard letter for your GP to countersign.

4. Register your official carer with your GP
I hated doing this , even though it was Mr Geek. But, actually if I need him to advocate for me because I can’t tolerate my pain levels, or one of the painkillers my GP trials with me causes a reaction,  he has full access to my medical notes and can make decisions on my behalf. It’s a reflection of our relationship that I quite literally trust him with my life.

When I’m going crazy with pain, he’s also clued up enough to give me a sensible painkiller regime.

5. Sort out your travel
If you are able to travel by public transport, you may be able to apply for a free bus pass. If your GP or specialist believes you are unable to travel alone, they may also provide a companion pass.

I came across this by chance when looking for accessible taxis and although I would need a person with me, I put forward an application to maximise my independence. I can’t drive anymore, so taking my mum on a bus is a back up.

A blue badge is dependent on your local council again, but it’s not as traumatic as you might think (possibly in relation to the PIP assessment). Send evidence & just be honest about your worst day.

6. Talk to Your Employer
They’re probably more scared than you are right now. Saying the wrong thing is easy and if they’re faced with a new situation they may not want to get it wrong. Access To Work have been incredibly supportive since I first sent them a timid email asking if I could ask for advice. Not only did they listen to me, they’ve arranged to help with transport to and from work and are supporting my employer with making physical adjustments. Staying at work was (and is) an important thing for me and my move to a wheelchair left me terrified that my job would be taken away from me in the same way as my mobility was. My Case worker has been at the end of an email to reassure me and has been one of the first people to talk to me like I hadn’t lost my mind even though I’d lost my body.

7. PIP is horrible, but there is hope
Apply. Take a deep breath and if you find the form too difficult, get help.
I can’t tell you about the interview, as the wait between form and interview is currently 16 weeks (it’s reduced!), so I’m in limbo. Right now, I wake up in cold sweats with nightmares of assessors who will shout at me to get up and walk, or who will yank a joint and dislocate something. I am a strong person and fiercely independent, but my mental health had taken a good kicking from this process.

The Benefits and Work website has lots of useful information & although they charge for it which sort of puts me ill at ease, they’ve supported lots of people through.

8. Prescriptions are expensive!
Being a human guinea-pig for pain relief is getting expensive. If you’re working, there’s no free medication and each item currently comes with a charge of £8.20 (even if the item costs more or less). My last prescription would’ve cost me nearly  £50 had someone in the GP waiting room not been chatting about the pre-paid prescription service. So are,  the easiest way I’ve found to do this is to buy a 3 month card over the phone, then with a month left to run, set up the £10 per month direct debit that gets a year long card for a 10 month direct debit.

9. The PAT Team are also there to help
One from my excellent sister-in-law. The PAT Team are there to support people who fall between the cracks of the NHS and social services. They also work alongside Access to Work team and provide advocacy and practical support.

10. Get yourself a friend
Chronic illness can make you feel really isolated and alone. There are some amazing support groups on social media and my daily Facebook interactions have dispelled some of the more unnerving aspects of having a rare condition. It’s also allowed me to connect with some people in person who have made life a whole lot nicer.
It’s hard to have a pity party when you’re supporting each other.

This isn’t an exhaustive list & I’m sure I’ll update it soon, but I hope you take away from this that you’re not alone.

What do you wish you’d known when you got ill?

Stop Trying To Save The NHS Money With Your New Fangled Technology….

We’ll have none of that hocus pocus technology around here.

I actually did a full on Patrick Steward faceplant in response to a perfectly polite email I sent to my GP surgery this morning asking about PoTS.

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I happened to have the email of our practice manager and thought that rather than wasting an appointment as I’d literally seen my GP last week and I just needed to forward some readings in, I’d pop it in a quick email.

I asked for an extra referral and if they could pass on some heart rate readings just for reassurance as the chest pain I’d mentioned was still around.

From the response, you’d have thought I’d emailed her a picture of my genitals! I was given a thorough telling off via an email which told me not to use email to converse with the surgery (irony anyone?) and that it was highly inappropriate to send her medical details… because you don’t get to see those working in a health centre?

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Then a phone call at 6pm.

Perhaps I’d got it wrong? Maybe the Dr had taken a look…. nope. A receptionist passing on a message that the referral was made but they wouldn’t look at my other information unless it was through “normal channels” – an appointment,  phone call, or letter.

Hang on… a letter? What you mean like a printed version of the electronic letter (That’s what email stands for you know) which takes more than 24 hours to reach you and can be opened by anyone? Or a phone call…. like the one we’re having right now? Ffs (I didn’t say it, but I THOUGHT it really loudly).

I explained in words of one syllable  (6pm…. I’m too tired and in too much pain for this crap) that their appointments are only bookable between 8am – 8.30am (if you’re lucky) which is during my commute to work. She suggested I used the Internet at this time to book an appointment. I asked if she made a habit of using the Internet whilst she was driving. Ok, I may have been a bit tetchy by then.

Final suggestion. Find another Dr as we won’t make this any easier. Nice.

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I’m totally feeling the love right now.

And so, people of the Internet, does this look a bit potsy to you? (I’ve been vaguely dizzy on and off since Feb when I mentioned a weird ‘bra too tight’ sort of pain feeling which is still hanging around in and off). These screenies were laying down then just standing up. No jumping jacks, or exciting moves (ha! As if.)

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(I will, rather than just asking the wisdom of the internet, apparently be wasting another GP appointment tomorrow to ask what could’ve been sorted by a quick phonecall… grumble grumble… but could do with a bit of reassurance )

My daughter is a Happster! #imahappster

Beanpole is brilliant. I can’t hold the washing up to hang it with my stupid elbow fracture, so out she trundles with her newly washed clothes and pegs them on the line for me.

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No good deed goes unpunished, and this afternoon we are meeting some old friends who moved away and she misses hugely at soft play as they are briefly visiting 🙂