Keeping up appearances

This is a bit of a false advertising statement, as I am so really NOT keeping up my appearance. The reason being, exactly a week before Christmas I found out that it’s possible to really dislocate easily.

It started as a typical evening. Due to have four kids together and pizzas. Whilst the oven was warming I was unwrapping some delicious looking delights. Then the pain started. I’m not exactly sure HOW I did it, but it felt like immense pain in my mid chest and I really could not breathe. This got worse and worse within a minute or so and I was trying to call out to anyone that could hear me. No-one could. I crumpled to the floor thinking that I was having a heart attack.

My youngest came downstairs and was enquiring how long dinner was going to be and found me unable to catch my breath when I managed to utter “I’m having a heart attack”.

The next thing I recall was being laid flat out on the kitchen floor with a hoard of paramedics. I could breathe a little now but I was still in agony. I recognised a voice being from a senior paramedic technician who had reset my knee last year and she remembered me and my propensity for popping everything in the most awful positions.

I hadn’t had a heart attack, I had dislocated my 8th, 9th and 10th ribs. These were then pressing on my lungs and SERIOUSLY hurt. I still couldn’t breathe too easily due to my diaphragm moving whilst the ribs were out and serious muscle strain from it all.

So morphine was needed. My veins did as they always do and refused to play ball. When they managed to find a vein, it collapsed. They gave up. Oramorph, not a yay from me. It makes me feel ok for about 15 minutes and then the extreme itching begins. It drove me crazy for 6 hours, long after I had been discharged from a very mystified A & E department as Ehlers Danlos is still not very widely known. They were adamant I had done it through significant trauma and not opening a cardboard pizza box.

Ehlers Danlos does so much damage to the body that can’t be seen to an outsider. The amount of tuts and disgruntled looks I get from people when I use a disabled parking space (sadly it’s older people far more than any others) but I simply cannot slide out of the seat of a car so I need the door wide open. I have a badge to prove this, yet I still feel judged. When my knees are strapped up and i’m on crutches it feels like I’m justifying the need for the ‘special treatment’.

Is it true that people are judging or is it my head in space that I do not fit the traditional disabled person picture?

My children do not see me as disabled. They know that I am very frequently in hospital or having operations, tests and appointments and that I take a LOT of medication, but even they have an image of someone in a wheelchair as being disabled. I will inevitably be that person, sadly it may be sooner rather than later, but for now I can occasionally pass for a certifiable healthy person.

I could live another 20 years, but it could be well under 10 before things become very tricky. Operations on my knees have been refused and I can only have life saving surgery. I have had a fractured left shin for nearly 18 months as it will not heal. It’s something that constantly aches, but is relatively minor in my list of daily pains. Simple tasks which I used to take for granted are now a struggle, such as sleeping! I turn over in my sleep and get woken with a clunk and then pain. Although I can fully dislocate, joints can also sublax, which basically is a partial dislocation. These happen continuously through the day and night so any movement can cause it. It is tiresome and monotonous.

Also affected, apart from joints, are any other ‘bits’ that require collagen to repair or maintain itself. This includes muscles, tendons, veins and arteries. That is basically everything, even the brain as it can cause strokes. Whether this has been the cause of epilepsy (a bulge pressing on my frontal lobe) in the last 4 years no-one has been able to answer me.

All I can say is, I feel like a horrible mess right now. I do not know which way is up and I am now rambling to myself on t’internet. I do not recognise myself at all right now.

When people surprise you

When you least expect it and need it most.

I am very easy to assume people are not interested or willing to help. But I have been shown otherwise.

Yesterday, I felt I was alone. Very alone. I was very very down. Lost in the darkness of my mind, I felt the world against me.

My neighbour, who I have become very used to and her quirky ways, showed up at my hour of need. I did not know my neighbour before she moved in just under two years ago. Her daughter aged almost three, was fascinated by my chickens so I invited her over to help clean them out. A bonus for me as bending down isn’t my forte. A little person doing the shovelling that I struggle with was more than welcome! This continued for a while and into the summer when my children would then invite her over to play. This escalated after the fence between our gardens got blown over in a blast of British summer weather and was not replaced. We now have any easy walkway between our gardens.

Since this, we have pretty much seen each other in situations that you would never normally see your neighbour. She fell pregnant and did not have an easy pregnancy at all. I honestly though I was going to catch that child as I would be through that gap in the garden every time I heard her scream in pain. I did not catch the child, but thankfully, both survived the ordeal.

We have seen each other in various states of dress… pyjamas, underwear and even formal wear. But yesterday, I was at my lowest and darkest moment. Stuck under my dark cloud sobbing my heart out not wanting to continue. The person that came to comfort me and keep me safe was my neighbour. She rallied around and contacted my carer who also helped, way beyond her remit and past her paid hours. Wrapped in a towel with wet hair, my neighbour sat breast-feeding her baby and stroking my wet hair as I cried. She called her mother, a GP who organised for the crisis team to come out. Sadly, I am familiar with these visits. But they are amazing people who ensure the safety and well-being of people, who are as they say, at crisis point.

I was never left alone in those dark hours. With children at their grandparents (having the time of their lives) I awaited the emergency Dr’s arrival.

I have been admitted to wards and sometimes they help, other times they just mask the issues I am facing. I did not want to be admitted. I need to start facing my issues. Head ON as it were.

I have to face reality and deal with my demons as it were. They are not unfathomable or insurmountable. They are not as big (although they are BIG) as they feel at 2 am. At 2 am EVERYTHING feels bad…. But it’s remembering that with sleep and support, I will overcome this hurdle called LIFE.

I need to remember that there are more people willing to help me than I give credit for. And I guess this goes for a LOT of people, that do not know just how many people will go out of their way to ease the pain and difficulties that get thrown in our pathways. Neighbours, family, friends or even strangers. There will always be someone.

Being appreciative…

And appreciated in return.

In today’s society, lots of deeds and words are overlooked or dismissed. I know I too, unintentionally, am guilty of this. Especially with my children. I am guilty of being very quick at pointing out when they are not helping, not listening or not doing what they are supposed to be. And most definitely when they are arguing. My goodness girls can bitch at each other over the most pointless things! Who argues over whose dribble smells the best?! (Yes, that was an ACTUAL argument!)

The girls do a lot for me. More than I would like them to sometimes. As young carers they know they do more than most children of their peer group would do… Little things, clean the bathroom every few days, help me carry washing up and down the stairs, put clothes on hangers (they can’t quite reach the wardrobe to hang themselves yet) and now we have a super little cordless vacuum, they help by pushing all the crumbs under the table further along the floor.

Miss Twinkle, being the eldest, had a little more responsibility. She was in charge of my morning cup of tea and tablet taking reminders (memory walked out a while ago and if I don’t take them first thing, I forget!)

On the 25th of April, whilst with her father, she broke her wrist. I was not informed of any details other than this, as he didn’t think to ask the Dr what sort of break or fracture, where it was or further treatment. The next day, she returned in considerable amounts of discomfort. It was obvious to see. So, she slept alongside me and proceeded to clunk me over the head several times in the night with her cast. But she slept. The next morning her younger sibling, most disgusted at not being kept off, was taken to school as usual. Miss Twinkle and I had an appointment at the fracture clinic. We were kindly taken along and paid unscrupulous amounts of money to park and we were called to see a consultant. Thank goodness it was quick. The vast waiting room was full of injured children and a few adults in temporary casts. The previous weekend had obviously been a busy one for breaking bones… Yay for trampoline zones according to the nurse. Ours was caused by monkey bars and an ungracious fall from about 6 feet straight onto her wrist.

The consultant was more than happy to answer my vast questions about growth plates, severity of fracture and outcomes. Even showed numerous x-rays. Now given the amount of time I have spent in hospital (and watching hospital documentaries) I was able to use terms to ask these questions so as not to alarm young ears. It was a nasty break. The tip of her ulna had sheared off and moved downwards. I could tell immediately what the course of action was. Whilst ears were still twitching I asked if they were going to try manipulation first. Thankfully he knew I was protecting her fears and assured that he would try, and promptly telephoned to see if any beds were spare in surgery. Miss Twinkle was unaware that pins were on the cards and I wanted it to stay that way… As much as she has seen me in terrible conditions, I didn’t want her to work herself up. My incidents she has dealt with sometimes more maturely than some adults would (many thanks to the St Johns Badger Club she joined aged 5 to give her first aid training in a fun way – it’s proven lifesaving and I urge all people to do such a course, young or older.)

No spaces were available until the following morning, so we were booked in to arrive in the day surgery ward for 7am the next day. Lots and lots of questions and reassurances later, she was prepared. The following morning we took the 40 minute journey back to the hospital and she was booked in. She was being promised popping candy chocolate orange pieces for when she arrived out of surgery. And that was what she focused on.

Then the hilarity ensued. She was the only one in for orthopaedic surgery that day (the boy in the bed next to us had glass stuck in his gums, another something in his ear, you know the stories.) So the surgeon came straight to us and introduced himself and the rest of the theatre team. They were extremely jovial and extremely reassuring to us both, even though I felt old as they were ALL younger than me. Something Miss Twinkle delighted in telling them. She was concerned only of the cannulae and feeling the anaesthetic going in. So I started singing a song about pink fluffy unicorns. She joined in and then started laughing as the pre med kicked in. Phew, she was doing ok. She decided she liked this feeling so joined in the singing even louder, adding that she was flying off to chocolate orange land and she was eating the chocolate people who were melting. The singing was loud so people were poking their heads round the theatre doors to see. It was the funniest scariest moment of my life. My baby was going for surgery, and to comfort her, we were acting like buffoons. To an outsider, this would seem odd. This is the way it works for us. Something goes wrong, make it funny. Lots of theatre staff  laughing and chocolate orange jokes coming from unicorns bottoms later, she looked angelic as she was sleeping. Then I cried. And laughed. And kicked myself for not filming it.

An agonising 50 minutes later I was allowed in to the recovery bay. I could hear the laughter before I could see her. The theatre staff that had missed out on the singing were asking for renditions whilst she was being awoken from her slumber. The minute I walked in and she saw me, she announced, a little too loudly “Mummy, you need to get some of this medicine, you would LOVE it! I feel GREAT! If this is what being drunk feels like, I can’t WAIT to be drunk!” I was mortified and slightly proud too. My girl is gonna be a happy drunk (When she is 18 obviously, I’m not sharing my measly portions of alcohol for as long as I have to!) The laughter was loud. A nurse said she is the best patient she has ever had in the theatre and that she should be on stage… Apparently she had shared her skill of “pull my finger” before I arrived. I am relieved I wasn’t there for that one! It is a finger that causes noxious gas to be released with astonishing sounds and smells.

And thus proceeded a few hours of laughter as the drugs wore off and I got to speak to the consultant again. It wasn’t pinned, it was manipulated back in to place as best as it could be and smothered with what looked like half a tonne of plaster, in an angle Pythagoras would have had trouble with. And we were released to pay the £74 car park charges (I may have slightly exaggerated, but only slightly) and head back home. We both slept like logs until 10am the next morning as the Pumpkin was stopping with her dad.

We have got back in to a little bit of a routine, both girls at school and a check up has proven the bone to be healing well, although will need to be monitored as it is on the growth plate. She is learning to write with her left hand and is enjoying getting out of P.E. But it has made me realised just how much she DOES do for me since she has been unable. Yes, I feel guilty that I rely on my children to do basic chores. It is not the way I envisioned myself to be as a mother. I should care for them. I do, but they are not supposed to return that care until I am old(er) and grey(er) and withering.

I bloody love my girls. Yes, I swear at them ocassionaly when they argue over dribble smells and lego hair, or refusing to brush their teeth or even just for being small arseholes generally. But my goodness, they are great kids. I’m not just being biased either. I must remind myself to be more appreciative of all the help I DO get, not just from my children, but everyone. My partner, who although lives a distance away, makes every effort between working shifts to help, the carers that come in and assist with jobs I can’t manage, the pharmacy who bring my medication to me and the school and carers hub that ensure the girls are able to be children away from me. I have great neighbours that will do whatever they can, one a lady in her 80’s that takes to looking after my cat (regular text messages about how she has bought him a new bed, new food or when he has left her house to come to mine) or making cakes and biscuits for us to devour.

I am SO grateful and appreciative to every single person that eases my life and my girls life. I will remember to say it more often. Or I shall ask someone else to prompt me if I forget.

And I appreciate YOU, for reading my rantings and jumble of words.