I bruise easily!

Just for reference, this isn’t about Natasha Bedingfield. It’s actual bruises (and a healed surgery wound). If you’re squeamish, you may not want to look. Also fair warning, most of the bruises are caused by needles, so if you’re not good with those either, run away. (For what it’s worth, I’m pathetic when it comes to needles.)

Excessive bruising on slight contact is a characteristic of HMS. It isn’t apparent in every patient, but it definitely does for me! I’m not sure why it happens, but it’s probably to do with the fact that our blood vessels aren’t as strong as most, so they damage easier. I’m often covered in coffee table bruises, door handle bruises, and I-have-no-idea-where-that-is-from bruises!

Generally I cover these bruises up, people feel uncomfortable when they see them and ask awkward questions. (Ranging from “What did you do this time?” to “So, your partner… is he an angry man?”- don’t get me wrong, I’m glad for the awareness on the part of people in cases of potential domestic violence, but it’s not the case here!)

So, why do I bother sharing these unglamorous photos? Because I feel pressured to cover up my bruises because people stare, because of the questions. I’m always covered in bruises or scrapes, all over my arms and legs so I wear long sleeves /trousers to cover them up. I also won’t wear vest tops (unless I’m with very good friends) because I have eczema and dermatitis scars on my upper arms. I have stretch marks all over my back, stomach and legs so I cover those too.

I’m tired of being covered up. It’s uncomfortable and unpleasant, and I don’t want to do it anymore. I’ve spoken to lots of people about it, and I’m going to be brave. No more covering myself up. Nobody’s perfect!

I’m going to try to be okay with the way I am.

Love from your battered & bruised,
but hopeful little Hypermobile Hobbit.

I’ve always bruised quite badly, but I will share some beauties from post-surgery now. (For reference, the Surgery was the 30th June.)


2 days post-surgery:

Blood sample bruises 2nd July

Blood sample bruises 2nd July

Cannula Bruises! 2nd July

Cannula Bruises! 2nd July

3 days post-surgery:

Blood sample bruises 3rd July

Blood sample bruises 3rd July

4 days post surgery: At this point my fingers also swelled like crazy!

Cannula bruises 4th July  (Happy Independence America!)

Cannula bruises 4th July
(Happy Independence America!)

Seriously swelled up fingers! 4th July

Seriously swelled up fingers! 4th July

Blood sample bruise 4th July.

Blood sample bruise 4th July.

WP_20150704_16_29_09_Pro

Nerve block injection site bruising – lots of holes!!!

1 week post-surgery: The blood sample bruise was really painful by now, affecting how I could rest my “good arm”.

Blood sample bruises 7th July.

Blood sample bruises 7th July.

Blood sample bruising (wrapping around my wrist!) 7th July.

Blood sample bruising (wrapping around my wrist!) 7th July.

Cannula bruises 7th July - almost all better!

Cannula bruises 7th July – almost all better!

The stitches were removed on the 7th, one week after surgery. It wasn’t fun, but I may blog about that later. I was a bit surprised the incisions were so tiny! They had healed up nicely, and I was finally allowed to have a shower!!!

9 days post-surgery: There was surprisingly little bruising around the incisions, a lot of swelling though! The vertical line in each case was the incision, and the horizontals were stitches.

The front scar - 9th July

The front scar – 9th July

WP_20150709_22_40_38_Pro

The back scar.

Two weeks post-surgery: By now the blood sample bruise is yellowing, so is harder to get photos of, but extends from my thumb to my elbow, and wraps half my wrist. It took about 3 weeks to fade, but photo’ing your own arm when you only have one functional arm is tough, so I stopped.

Blood sample bruise. 14th July.

Blood sample bruise. 14th July.

18 days post-surgery: I started to get bruises on the backs of my legs, just below my knees. This was because I wasn’t able to lift myself out of chairs or up from sitting on the bed easily, so my knees were hyper-extending to compensate and pushing the furniture.

Calf bruise  16th July

Calf bruise 16th July

20 days post-surgery: The problem is, if you keep hitting the same area, the bruises get worse…

Calf bruise 20th July.  What a beauty, right?

Calf bruise 20th July.
What a beauty, right?

On the plus side, the horizontal scars have faded pretty quickly.

Scar 20th July

Scar 20th July

3 weeks & 1 day post-surgery: The bruises on my legs were fading, mainly because I was being super-careful.

Calf bruise 24th July

Calf bruise 24th July

So, that’s some epic bruises on me! The calf ones are literally just repeated pressure, so it’s easy to see how huge bruises can be created from repeat small pressure on people who bruise easily. They took about 2 weeks to clear up, because I kept repeatedly catching my legs (lightly) when balancing myself.

Dear Other Normal Human Beings

This is a beautifully written blog, about why the NHS is marvellous.

Dear Other Normal Human Beings.

Please give it a read, and fight with us to protect the amazing services and people in the NHS.

I know that without the treatment I have had from the NHS, I would be unable to work because of pain levels & I never would have managed to get my degree.

I spent two years fighting severe anxiety and depression. Without the NHS I probably would not have made it through.

I can’t explain how important this is.

Best wishes,

Your politically-anxious and very scared,

HypermobileHobbit.

P.S. Forgive any odd formatting. I have a windows phone now, and the browser doesn’t like complicated websites. Will blog my surgery & recovery once I have the willpower.

Striving for stability.

We are moving house on Saturday. Nearly my whole everything is packed in boxes… We don’t have enough boxes. I am hoping that if I go to volunteering in the morning then it will all fall into place.
We have also just been told that there are 2 viewings arranged for the day we move. Just what we need!
My leg is still busted. I can move stuff around the house but the pain flares if I put much weight on my leg.
Tomorrow I am off for my first advisor meeting for jobseekers. It turns out I have been put in for contribution based jobseekers, not income assessed jobseekers, so they can’t pay me. I hope to get this sorted tomorrow.
I have to book a doctor’s appointment for next week as a check up for my leg and my painkillers. My MRI is next week too.
I really hope I get the PhD place, that this flat all comes together and that my leg fixes so I can get into a proper routine again.
I just want a normal week really.

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…

image

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!

image

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?

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!”

Nervous

Tomorrow I have a job interview. I’ve worked out which bus to get, booked the taxi so I can avoid the piffling 18 minute walk from the bus station to the place I’m being interviewed.

I’m trying my best to plan for every eventuality to deal with the anxiety. The knee instability makes it even worse than a normal interview, which isn’t fun! Heaven only knows how I’ll sleep at all tonight!

I have packed spare shoes (in case my new posh interview shoes aren’t grippy enough), packed my presentation (both as a USB, email, and printed slides), packed all my paperwork and certificates. I’ve also packed my wrist supports just in case, called the interviewer and explained I’m on crutches, put painkillers aside, organised company for the walk home from the bus (just in case). I’m fairly sure I’ve not forgotten anything. Apart from the fact I’ve just realised my blouse for tomorrow is still hung up outside.

*hobbles out into the dark*

Wish me luck!

Stress

Sometimes I wonder if it is possible for someone like me with a time consuming condition and anxiety prpblemd to hold down a job, a family and normal friendships.
I know I am high maintenance. I cancel arrangements at short notice, I fall asleep on people and the pain makes me grumpy.

But then I just try to think how much progress I have made. I can mostly care for myself, with the exception of my back (because nobody can reach their own back) and reaching far (balance is not my friend).

I just have to try harder and do better. More physio, more exercise, more painkillers and less time on fun stuff. Then maybe I can be more reliable and more confident with my body.

Panic Attacks and Emetophobia

A lot of what I post isn’t very… personal. This really is.

It’s been a long time since I last had a full blown panic attack I think (I still have little wobbles), but I was watching a BBC programme on 5 young people fighting with OCD and it includes footage of them becoming incredibly anxious, to the level of panic attack. It got me thinking…

First things first: I am an emetophobe. I’m afraid of people vomiting. Sounds stupid huh? 5 years ago, I would have crossed the road, or even turned back and gone home if I saw somewhere someone had puked on the street. 

I guess it relates back to mild gastro-issues from anxiety and HMS, severe motion sickness (which I think might be made worse by my reduced stereopsis – I have a squint or turn in my eye. My glasses correct this but cause my brain to suppress almost all vision from my left eye.), and a history of eating disorders. I guess I should clarify, my fear relates more to other people being sick, rather than me. 

 

The last full-blown panic attack I remember was when I was back in Bristol. We went to my partner’s Grandparents’ house for a visit, with his parents and his little brother. We drove there without incident, but while we were there, Little Brother started saying he felt unwell. My anxiety level rose, a lot. I wasn’t that comfortable getting in the car on the way home. About half way home Little Brother declared that he was going to be sick and started gagging. He was on the opposite side of the car to me, we were both in the back seat. I immediately went into full panic mode. Little Brother was given a carrier bag as we couldn’t stop because we were on the motorway. (Damned traffic laws!!)

As a panic control mechanism, I caused myself pain. I know it’s the wrong thing to have done, but it helped me re-exert some control over the situation. I grasped onto the car door handle as hard as I could, which forces my fingers out of their joints a bit and is very painful. My partner was next to me and held my other hand. I’m pretty sure I held it so tight that I bruised him. I ended up crying silently, hoping to hide myself by pressing back into the car seat. It was downright embarrassing – an almost 20-yr old having a panic attack at the THOUGHT of Little Brother being carsick. He wasn’t even actually sick in the end! I jumped out of the car as soon as the car stopped, and my legs gave way. Thankfully I could lean against the car so I could kinda hide. My partner, being the awesome man that he is, got his Dad to open the side gates to allow me to walk down the side of the house so I didn’t have to walk in with Little Brother. It took me a good few minutes to be able to move, and even then I couldn’t let go of his hand.

Even now, 5 years on, I’m getting teary eyed about it, and have a lump in my throat. But the thing is, it’s mainly because of the progress I’ve made. I can now walk through the centre of Nottingham BAREFOOT, on the week of the Graduation ceremonies. (My shoes hurt a LOT. Someone had thrown up on the path, and I just calmly walked around it. I know people throw up there all the time, because it’s a student city.

I admit, I still get stupidly anxious about tiny things. I still feel sick before leaving for volunteering. I will probably still feel panicky every time I travel. But the difference is, I try not to let it control me now. I know I have had an anxiety disorder, and probably always will. I know that if someone throws up in the same room (or even house) as me, I have to leave for a while to regain control of my brain.

 

But I don’t always have to be “Jen, the one with the anxiety disorder”.

Sometimes it’s just good to be “Jen.”