MRI results!

I finally got an MRI two weeks ago. It was done at the medical school attached to the hospital, because the MRI dept were having some technical difficulties with their machine. It meant that instead of having nice nurses talking me through it all and chattering away merrily, I had two PhD students who mostly talked to my partner about his Physics degree, and who spoke in such mumbled tones through the microphone that I couldn’t understand a word they were saying! (I honestly don’t know which one it was talking really, and considering one was male and one was female, and they were from different continents, that’s saying something!!)

It was pretty OK, other than the fact they didn’t offer me a blanket to keep warm, didn’t explain what was going on, and had to re-scan three times (I think) because I moved. I moved because when you put a person with an injury in a painful position, they tend to move! Especially if they have cramp-inducing conditions such as HMS! Bad patient relations. They didn’t even tell me their names. Have they not heard of #hellomynameis? Silly people! This is what happens when non-patient-relation people are put with patients without supervision. I get that they’re students, but if I didn’t know what it was going to be like, if I was claustrophobic, if I had no idea why the machine keeps making quite scary alarm noises – then I’d have been terrified! They didn’t ask me at all if I was scared, and they knew it was my first time in an MRI machine. I wasn’t that impressed all told. The problem is, I can’t very well write to the PALS service because these guys aren’t hospital employees, and aren’t covered by it.

I got the results back on Tuesday. My GP said “We have a positive result.” Which I took to mean there was something there on the scan. She meant positive, like “good”. All my tendons are fine, no fractures, no cartilage damage, no membrane damage. Apparently there’s a small effusion (liquid pool) in my knee, but that’s totally normal and shows up on anyone. I did point out that the day they scanned, I hadn’t moved a lot in order to minimise discomfort in the scanner, so it didn’t hurt a lot that day anyway. So the verdict is… there’s nothing really wrong with my knee. (Or if there is something wrong, it’s soft tissue).

That’s not as comforting as it should be. It means I’m being sent back to physio *again* only this time, it’s with a new physio. One I will probably have to teach about HMS because they won’t have heard of it… even though I alerted the triage person to it when I called up for the referral. I’d rather there was something actually wrong almost, because then I would feel vindicated in the fact I have been totally unable to do pretty much anything for the past two months. I’ve been relying on the crutches so much I have bruises on my palms, damage to my back and shoulders and a fairly manky looking scab on my knuckle. Sometimes having a rare condition is an absolute pain in the ass. I get so tired of constantly having to explain it’s not like arthritis, it’s not “just being bendy” and it’s definitely not me faking it. I hope and pray that this physio magically turns out to be one of those awesome NHS employees that hide away in corners, diligently doing their job very well and hiding from all the ridiculous bureaucracy. If she’s like my first physio who did friction massages on  the tendons inside my shoulder. Yep, he popped my shoulder partially out of it’s socket, and rubbed the internal tendons with his thumb. It’s one of the most painful things I’d ever experienced, up until this knee injury.

I suppose I should be glad that my knee is fixable. I’m not going to be stuck this way forever. But then I was told there was a 6 week wait for physiotherapy, which made me want to just sit on the floor and cry. I was going to be left for 6 more weeks sat in this state, in pain and not really knowing why?! I was angry, frustrated and tired. And worse than all that, I knew that the injury was all my fault in the first place. I knew the weather was bad, I heard the lightning when I was leaving, and I didn’t turn back.

Thankfully, someone in the heavens seems to like me, and the physio called me up to “fill up her calendar”. My first appointment is tomorrow afternoon. She’d better not break me, else I’ll make her carry me home.

I’ve got a whole bunch of stuff to do in the morning, including picking up £25 of shopping centre vouchers I won off the City Council for completing a survey about my opinions on additional licensing for Houses of Multiple Occupancy. (Should landlords who buy up cheap houses and convert them into student lettings pay a premium rate of council tax, basically.) If I get a job, that money might get spent on fun things. If not, then it’ll get spent on food. If I do a lot, then my leg will hurt and she’ll see what the damage is! That’s my plan anyway. I’m not going to do anything excessive, just a small half hour walk to the train station. I’ll bus it back like a good disabled girl! I’ll even use my crutches to minimise the damage!

The house move was a success too. We’re almost completely unpacked. My partner, bless him, moved nearly everything by hand, with the aid of an awesome friend of ours.

Oh, and I modelled for a trainee hairdresser and now have a (and I quote) “Sexy swinging A-line bob”. I shall try to put up some photos later.

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Not so lonely.

Today, I am stuck in bed with pain (both the leg injury and a fibro flare), but also nausea and stomach cramps from the codeine last night.
Previously I would get really depressed because I hate sitting being useless, but also because I’d feel really isolated and left out. I knew of no other 20-somethings who were laid up with pain and side effects as much as me. I felt like it was my fault because I was the only one like this.
But then I started blogging, because I wanted to share what its like to live with a body that won’t work when you’re still young… And what did I find? All you guys blogging out there sharing advice, care and support in a similar situation to me.

Thank you all.

I’m going to have a nap now.

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*

I ran…

I ran...

I ran away from a thunderstorm a few days ago. I now have a large lump about two inches below my knee. My doctor says she has no idea what it is – maybe a deep bruise – but if it’s still there in 3 weeks, I will need a CT scan.
Oh, also both my legs bloody hurt. This one from the bruise/sprain/god-knows-what… and the other one from damage from limping!
It’s novel actually, because this injury is actually stopping me moving properly, but I am still doing everything I want to. I’ve been doing a LOT, which is refreshing as the gap after the end of a uni year is often sedentary for me.
Shame I’ve not got a job yet, but we’ll get there!!

Why am I so grumpy?

I’m sick, I picked up a throat/chest viral thing and it’s made me feel like hell, so I’ve been unable to do pretty much anything including physio. Because of the lack of physio, my everything hurts (mostly shoulders, back, neck – causing migraines). 

While this is happening I’m meant to be applying for jobs – which is more taxing than you’d think. If I go into a job interview, there’s a high risk of people deciding that because I have a joint condition, they don’t want the risk of having me around. (They don’t say this because it’d be discrimination, but I can read it in their faces, and have heard similar stories from other bendy-folk.) 

Being told I can’t do things is something I find very difficult to deal with, because I’ve only just come to terms with the fact my body has a mind of it’s own. Having other people imposing more restrictions makes me feel like a “special case” which I hate.

Sometimes I just wish I could be normal.

Medications

I just looked through a few of the statistics on my blog, and I stumbled across the list of search terms that people have clicked through to my blog from. There’s several that worry me.

There’s a lot of people it seems “googling” (Or having a Goog, as my best friend calls it) how to take medication. This is NOT SAFE. People on the internet are not medical professionals, and they do NOT know your medical history. Ask a qualified pharmacist, or your own personal doctor or GP. Especially with prescribed medications!! 

Medications, as wonderful as they may be, can potentially cause horrid side effects, or even kill you if you mess around with them. Take them AS DESCRIBED by your doctor, and ONLY that way. If you want to deviate from that, go make another appointment and ask for advice. DO NOT under any circumstances take medication prescribed for other people, and for the love of all that is holy, READ THE DAMNED LEAFLETS!!!!!! They’re there for a reason. Any time you get a new medication, talk to your doctor thoroughly about how and when you can take it, and if you are concerned, ask about side effects too. When you pick up the medication, read the enclosed leaflets (which should be provided with any meds) about side effects and dosages, and then still follow your doctors advice (unless your dosage and the normal one differ too much I suppose, mistakes to happen). High strength medications can have nasty side effects, especially the pain killers often thrown at those of us with chronic pain. I know that most of you won’t have chemistry degrees, so I’m not expecting reverse-engineered mechanisms of how to make the damned drug!!

Just know: 

  1. What it is for? This should be on the packet or info leaflet.
  2. How does it work? (roughly). You can normally get this from google.
  3. What is the dosage? Your doctor should tell you this.
  4. Is it addictive? (How long is it safe to take it for?) This will usually be on the packet/info leaflet.
  5. What are the side effects? These should also be on the packaging somewhere, along with risk factors.
  6. Is it safe to take with other medication? In the UK, your pharmacist should ask you if you have taken a medication before, and if you are on other medications before giving you the medicine. If you are unsure – bloody well ASK!!!!

Come on guys, it’s your bodies we’re talking about. LEARN ABOUT THE STUFF YOU ARE PUTTING IN IT!!! I’m not talking go all crazy and only have hand-reared organic chickens that were played Enya each night as they fell asleep. I just mean if you are going to take medications, be responsible. THINK before you take things – especially painkillers. Do you really need that codeine, or are you just taking it because you always do? Would paracetamol and a rest help? High-dose codeine based painkillers can actually make pain worse – try taking a break! Talk to your doctor for a medication review.

Above all, do NOT take dosage advice from non-medical professionals, and do not mix medications unless you are told that you can by YOUR medical professional. YOUR body is personal to YOU. Just because Dave in Santa Barbara can take the meds his way does not mean it is safe, or appropriate for you.

Please PLEASE, take medications properly. And PLEASE, I am asking you as a regular medication user, PLEASE ask your doctor if you are unsure about anything. That’s what they are there for. If they refuse to explain, then get a new doctor!!!! Like I always say, doctors provide a service, if they are failing to provide a service you deem to be sufficient – tell them to get stuffed! There’s plenty more out there!!

OK. Rant over, I promise the next blog will be about my pretty hair and shoes.