Do Not Lose Your Sense of Humor!!!!

noonegetsflowersforchronicpain

Do Not Lose Your Sense of Humor!!!!

Not everyone is going to understand an invisible illness, especially chronic pain. People have judged me most of my life because of this invisible illness and it used to make me so depressed. I look fine, I’m in good shape, I have a college degree, and on the outside I appear to be the happiest person you will meet. Chronic pain sucks. There is no way to sugar coat it. But, do NOT allow anyone to make you feel less of a person because of your illness. Ignorance is everywhere. We cannot make people believe that we have chronic pain. So what? If someone doesn’t believe you then you are better off without them. I have lost a lot of friends due to chronic pain and maybe it is a sad thing but I am actually at peace with that now. I do not need anyone to believe me. I…

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30 Things About My Invisible Illness You May Not Know

I am planning to add my own answers to these questions, but this blog illustrates the feeling of living with a complex and chronic condition.

Life Through the Eyes of a "Cat"

Invisible Illness Awareness Week

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari Malformation, Syringomyelia

2. I was diagnosed with it in the year: 2009

3. But I had symptoms since: I was a small child

4. The biggest adjustment I’ve had to make is: Realizing that I am always going to have to struggle with everyday tasks…

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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.