Hiding in Logs

I feel calmer today. Phil is off work.

A simple thing such as changing GP seems to have caused me a lot of stress. I guess because medicine is a huge part of my life now and collecting prescriptions, keeping stocked up, ordering tube feed supplies etc is a daily thing. I like to be overstocked if anything so you know you are prepared. Some of the meds come from hospital, some from pharmacy, some meds are controlled meds and can’t be ordered online, and some meds need special training and to be pre draw and taken everywhere.

I sometimes genuinely wonder how on earth I filled my days before we had Amy.

My nightmares are still really bad. When all signed up for the GP I need to try and tackle it. I’m waking up panicked and exhausted most days. Last nights one (the bits I remember) were sort of hilarious in a way. I dreamt it was my dads’ Birthday and that to celebrate we staged a zombie escape day. There were 100 “zombies” (people dressed up) and 50 civilians (i.e us). Annoyingly the zombies could track us on these infrared tracker things.. we only got 10 seconds to get ahead of them and they weren’t allowed to run. I refused to do it saying my anxiety was too bad so I stayed at this lodge thing. As the game went on, more and more people returned to the lodge missing chunks of their arms, limbs, all sorts. I started to realise it wasn’t just a game. This then turned into me genuinely fleeing into the forest searching for my family in a frantic panic. People were hiding inside man-made logs unaware that the zombies could track them. It was petrifying. The night before was some sort of torture escape one, and that one really was scary.

Irony by the way – I just had a call asking if we need any feeding supplies. Ha. A while ago I did actually tell them to stop calling.

I overdid it with the lifting of Amy over the weekend. Did lots of helping her walk by fully supporting her body and shifting her weight on each leg so she sort of walks. It’s hard work for both of us but it’s nice I can give her that sensation and also physio recommends it. But my back is paying for it two days on!

Tomorrow I start doing some mystery shopper typed things. I need the spending money.. every time I get a phone bill it’s like arghh. All carers allowance and DLA goes to paying bills and also to all the extra things we need to buy for Amy (probiotics, bibs, gtube pads, stuff like that). Phil works so many hours and that pays for the petrol and all the bills and rent… but I hate feeling guilty if I want a coffee somewhere etc. Working full time weirdly gave me a freedom I never knew I had. Hopefully I’ll hear about the voluntary work soon too.

Anyway. Sort of just checking in. Amy has her EEG today. Her first day back at school after school holidays and the poor thing gets dragged out to have probes put on her head. I am part nervous, but mainly expecting her to not be having seizure activity. I think the big one she had is either a one off, or it will happen in a few weeks or so and therefore not get picked up on. We shall see.



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Dear Specialist

Itching to Complain about Eczema

According to the National Eczema Society 1 in 5 children suffer from eczema, and 1 in 12 adults are afflicted with it. It is quite literally a pain and I have battled with it all of my life.

It seems that social media is enlightening a lot of people on chronic illnesses and making us aware of the strife others face. For me eczema affects my daily life and has done every day of my life. These days it is mainly my hands that are affected.

Don’t get me wrong, I know there are far worse illnesses and I know that my daughter has contended with much more than this. But I have never really put into words my journey with eczema and not a day passes where I don’t wish I didn’t have this problem. I am also aware that there are people who suffer with eczema far worse than myself and they have my deepest empathy. I don’t write this post as a whinge, “feel sorry for me” or a “oh woe is me” entry, I just felt like writing about it as today it has been my main focus as I try feverishly to recover from my latest flare up. (Amy is at respite so I have had my hands free-er than usual)

Recently I am afflicted with a flare up that I haven’t been able to tame. I can attribute a lot of the blame to my care duties with Amy – She is tube fed and this means drawing up a lot of medications, washing my hands a lot, cleaning a lot of syringes. In addition to this I do a lot more laundry than most people probably do, and also bath her a lot as well – all related to her gastro/feeding issues. The knock on effect is that I am constantly dealing with chemicals, wetness and all sorts. I have a diprobase pump in most rooms and have switched to eczema friendly hand wash (dermol 500)… in addition to this I have special shower gels, diprobase, cetraben, ultrabase, and epaderm. My doctor has stopped my steroid creams because I have been using them for too long and it is actually exacerbating my symptoms.

My very kind friend Lucy recently posted me some zinc based bandages for helping atopic eczema. I think the idea is that you wrap them on, then cover with normal bandages and leave it for 3 days. It seems to work, and the bandages are quite fun to put on. You get the added bonus of looking like your hand has been mummified, and if you’re as fascinated by ancient Egypt as I am, then this is a true Brucey bonus.

Unfortunately though due to the location of my eczema it is very difficult to keep the bandages on for this amount of time – my lifestyle is not suited to relaxed hands! I have been keeping them on overnight and trying hard not to itch, I also have cotton gloves for helping epaderm soak in properly overnight. It’s still not gone though. My hands are so so dry. The temptatinon to itch is overwhelming.

When I visited my GP last week she was visibly shocked by the extent of the damage. My hands and fingers were weeping, bleeding and so blistered. I wanted to cry. If you’re like me, and living in the UK with this – if you don’t have a pre payment prescription I suggest you set one up! I got prescribed about 5 different creams last time and if I wasn’t paying £10.50 per month for my precriptions it would have cost me about £40!

I sometimes think some of my anxiety issues can be blamed on my eczema. If someone goes to shake my hand I can feel my heart pounding through my chest and I’m thinking “please don’t notice my gross dry hands, please don’t” (Also I don’t like touching people, and I freak out about hand germs.)

I miss using heavily scented bath products like radox and stuff from lush, I wish I could use my hands with confidence, I wish I didn’t have to spray my perfume on my clothes. I am dreading summer and the need to apply sun cream.. this is usually guaranteed flare up.. I think I would rather burn from the sun than from eczema.

In my desperation I have been reading up obsessively on causes of eczema, and treatments. The fact that it is on my hands is obviously pointing towards it being from things I have to do with my hands. So I wear washing up gloves when cleaning, spontex gloves if dying hair and sometimes preparing food.. I read that some people bathe in oats, or they try to rule out allergies by cutting out dairy, gluten etc. I don’t have the will power or motivation to cut out dairy or gluten, as for oats.. i keep forgetting to buy them. I have been bathing in oilatum recently and i love the smell.. I just miss the foam because 1) It is pretty and 2) It hides my fat whilst I’m bathing and I can pretend I’m a mermaid or supermodel, and let’s not rule out bubble-bodied human hybrid centaur-like thing.

I am always envious of people who don’t have to deal with this… not that I would wish this on anyone. I hope when I complain about it people can understand that this is a lifelong, ongoing, chronic illness. It isn’t just a bit of dry skin… it is burning, agonising, bleeding horror! So, I will go now, as in less than an hour I need to pick Amy up and I am wasting valuable hand moisturising time typing… it was either that, or a greasy keyboard.