Blood pooling, and pregnancy looking swellings .

On the whole I avoid contact with mirrors and cameras, they are evil things that show up the slightest of floors. I even only look at the bit I’m doing in a mirror on those rare occasions I wear make-up, I’ve perfected the just looking at an eye or my lips and not seeing my whole face. But mum and dad have been decorating their bedroom and had problems with the mirror panel so it got put in the room that my carer helps me do my hair in. I actually didn’t realise this until this morning, as I said I’ve perfected not looking at or for mirrors, when I happen to glance to the side while my carer was drying my hair. Now I could say I was horrified to glance my chunky legs because they’re so big, but for once it wasn’t this that struck me. To my horror my legs were a mass of mottled patchy blue, purple, red and white. This was even worse on standing. I know that I have POTS and I know that this causes blood pooling, but not being someone who likes my legs I’m loathed to get them out even on the hottest of days. Usually I am to be found with cut off trousers which show barely an inch of skin before my splints, so when wearing my towel and dressing gown this morning meant that for once most of my lower leg was on show. I could, for the first time, see in all their technicoloured glory my badly bloodpooled legs!! I don’t really know quite what I expected, whether it was blissful ignorance that I didn’t think my legs did this or whether I was just stupidly forgetting this symptom but whatever it was it did shock me!!! I couldn’t take a photo of this (my phone being doenstairs) but there they were, they even did it again when mum was helping me get ready for bed so she saw this phenomenon too.  It is yet another sign that my POTS will not be igmored any more!! 

On of my other strange symptoms at the moment is my gloriously swollen stomach. Now I know I’m no size 2, far far from it, but this is quite obvious swelling. My stomach can go from usual to looking heavily pregnant within minutes. I have very bad IBS symptoms and know that I should really do a low histamine diet but I can’t face it!! Now some of the benefits of this are obvious, before I was pretty much full time in the wheelchair I used to get offered seats and people used to be nicer to me as I was “pregnant” it’s not so much of a benefit now because I’m more obviously disabled though. I’ll put a piccie so you can hopefully see what I mean about the swelling!!! But unfortunately it seems that this is just one of my bodies tricks because however much I’ve tried I always seem to swell. You never know I might end up getting a solution but until then I will randomly end up looking like this……..

Carers and phone calls

I’ve been having a bad few days so haven’t been up to posting. Today’s post I decided to write about my carers.

I’m lucky in a number of ways but one of those is my wonderful carers. I’ve deteriorated so much I have 2 different ones. I have my wonderful mum, who I love spending time with and who is my full time main carer, and then I have a regular carer from a care agency. I’m lucky on the whole the carers I’ve had from the agency have been really great and have become good friends. My current one takes me to appointments and helps me shower, do my hair and get dressed. I’ve had to make my peace with the fact that I need help with showering. I’ve always hated my body, I’ve got a patchwork of scars on my stomach from 3 keyhole surgeries (why they couldn’t go in through the same holes I will never know but presume there is some medical reason why not). 15 different sized keloid scars make me look like I’ve either had my body rebel against me and split apart or that I’ve been the victim of a very vicious pixie attack where their little sword has pierced my stomach in short little bursts!! It’s not pretty. Even when I had lost all my weight, (I had a gastric band and lost 6 stone) or before I’d even put my weight on, I had a sea of bright stretch marks shining on my thighs and stomach like waves rippling on an ocean, due to my EDS and my stretchy skin. I won’t go into any more detail as I have gone far into the realms of too much information already but needless to say I hate my body. Getting used to having another person helping me shower has been extremely difficult, my carers have been such that they have taken some of the embarrassment away, but I still do feel a little uneasy. However I do need them as I cannot manage on my own now. They also take a little of the work off mum who, apart from this hour in the morning and for certain hospital appointments, looks after me for the rest of the day.  I have so much appreciation for what my carers (especially my mum) do. 

However some people I rely on like my mum are tired themselves, it’s not that she doesn’t help me as she is always there for me but I wish I didn’t have to rely on her so much. She has a heart condition herself and also seriously arthritic hands.  I have been trying to get mum some help from carers support  (in the UK as am I) but they require a phone call, phone calls for me (and my mum) take all my energy, the sheer terror that a ringing phone sets off can trigger a total panic attack before I even answer it. Making a call takes every ounce of strength to remember to breathe,  follow the conversation and formulate my answer that often I can’t physically listen to the other end, I have to forget that long pauses on the phone don’t work and people often get frustrated with me. Either that or I can’t stop myself from interrupting their comments because if I don’t say my thought then and there I will forget it, again making the person on the other end of the “conversation” impatient with me. I used to write a short comment to read out before I started a phone call saying that they had to give me time to think and they had to be patient because sometimes I would have to ask them to repeat things, but even that didn’t work and I used to get them being even more impatient so I have stopped. I even have a message on my phone asking people to leave me a message so that I can expect their call and hopefully answer it and that I will block those who don’t leave a message as I will assume that they aren’t genuine (because I’ve had countless PPI, injury lawyers and other scam/nuisance callers), but again that seems to annoy some who leave stroppy messages!! It’s lose lose for me because it all adds up to my total avoidance, wherever possible, of using the phone. But when, like now, either I or someone I know needs something I spiral out of control again just wrestling with whether I am able to build myself up enough to make one simple call or not.  I just wish that getting help wasn’t so hard!!!

So what I will do about getting help I don’t know. But we’ll muddle through I’m sure, we’ve had to up to now!!!