Wednesday, May 31, 2006

Erasmus Von Uberkatzen

Erasmus Von Uberkatzen
Originally uploaded by girl_of_bats.
On Sunday we went over to Norwich to visit Erasmus (pictured) and his slaves Scott and Clare. We had a nice chat and a cuppa, but the idea of lunch fell through as they had already eaten and the idea of going out wasn't a good one either as Scott really wasn't feeling too well and Clare had some stuff she should be doing (I think she wanted to look after him a bit too).

So Steve and I set out shopping with the trusty wheelchair, Steve's first time out with it. It was great. If we were in a queue, I could just cuddle into his belly rather than leaning on my stick and shifting positions in agony. We could go at a reasonable speed, we didn't have to keep stopping, I had both my hands free, it was excellent. We had a nice cake at Druckers, and got some treats at Hotel Chocolat, had a look round Ann Summers (who I have to say were A1 on the accessibility front although I think the disabled changing room was being used for Naughty Things, I'm glad I didn't need to use it) and played with stuff in Hawkins Bazaar and the Early Learning Centre.

About three hours later we returned to Scott and Clare's flat and I had a half-hour nap. The plan was that we could then go out for dinner, but by the time I woke up Scott looked and sounded like death warmed up, Clare was starting to feel iffy too, and I was still pretty tired, so we just called it a day. I slept in the car on the way home, and we got some takeaway for dinner before snuggling down together. Lovely.

Tuesday, May 30, 2006

Still Mmmmm

Steve arrived early early early Saturday morning. I still felt lovely with massagey goodness. It was wonderful being able to greet him and embrace him and, um, so on, being flexible and well-rested rather than stumbling and wincing. Not quite back to the pre-ME days, but as near as I've been in the last year and a half.

The feeling of being able to happily hug him and say "I'm not under the influence of any painkillers at the moment" was amazing, even if we did both know that it just meant my as-and-when-the-pain-is-too-much painkillers - obviously I was still taking the ones I have to take every morning and evening.

After a bit of a snuggle and sleep, we headed up the seafront to a little cafe for a cooked breakfast, lovely. Then more time just being together... I had missed him so much.

The afternoon was spent with Pip and the Littlun. That wasn't part of the plan but all is not well in fairyland between Pip and Davina. Pip's under a lot of stress and desperately needs support and people around him - amongst other things, Littlun is ill, Littlun's mother keeps messing about which days she wants to see Littlun, it's been well over two months since she left them and Pip quit his job to look after Littlun and despite the JobCentre saying "yes, of course you'll be entitled to Income Support" they still haven't actually officially confirmed this or given him any money to live on yet... then on top of this, Davina, his new girlfriend of what is it now, two weeks? decides she's going to go out for dinner and to the cinema with her ex-fiancee, and she's going to pay for it too, because it's the day they would have got married if he hadn't cheated on her and left her.

None of us can figure that one out. We'd have understood if she'd told her ex she wanted to go out and then met him while being WITH Pip and a smug my-life-is-working-out grin, and left the ex to spend the evening by himself... and we'd have understood if she'd been making her ex, as the cheating bastard, pay for the film and the meal and everything, and then poured her drink over his head before leaving... but to want to ignore your new boyfriend when he needs you, to spend your money taking the old one out on a date? I mean, huh?

I'm bloody glad we were there with Pip too, because just after 7pm - Littlun's bedtime, and remember he was ill and therefore not a happy bunny - she actually had the nerve to call Pip. To tell him what a lovely time she was having and how great the film was. How Pip managed not to yell at her I do not know. Instead he very quietly, very levelly told her that as it was just after 7, he was trying to put Littlun to sleep, and couldn't talk right now. I could hardly look at his face.

Steve and Pip get on like a house on fire though, which is fantastic. We all helped tidy up, and we all chatted about all sorts of inconsequential rubbish, and we were all back on an even keel soon enough. :)

Mum's Heart Chart

Mum's Heart Chart
Originally uploaded by girl_of_bats.
On Friday morning I went for a massage. I'm lucky that where I live I know a very very good massage therapist with 20 years experience who *just* does stuff like yoga classes, massage, aromatherapy, reflexology and so on. This is infinitely preferable to some girl my age who's done a two-year part-time course in "Beauty Therapy" of which about six weeks was massage, and who is fitting me in for a body massage lasting exactly one hour between her other appointments for the morning which include an ear-piercing, a bikini wax and a manicure.

The experience with Jane is much nicer and goes as follows:
11.25. I arrive, and we have a little chat about how I'm feeling, what oils to use today, music, room temperature and so on. I get undressed and onto the bed, and am tucked up face-down under some towels and a duvet to get properly warm and relaxed while Jane prepares the oils.

Then for about 45 minutes, Jane massages the back half of me, from my feet to my hairline, using her hands and heated stones, and folding warmed towels around me so that only the part of me she is working on is exposed at any given time.

That puts me to sleep, so since Jane always allows lots of time for appointments (she doesn't like to rush herself or her clients) she leaves me to have a little nap for half an hour. I wake up as the CD finishes, and she comes back into the room to help me turn over.

Then she works on my front half, from the feet up again to my shoulders, down my arms, and finishing by using a lighter oil for my face, scalp, ears and neck. Then I'm left to have another little snooze before being woken up with a cup of apple and cranberry tea.

It was about 2.15 by the time I left, and I felt wonderful. I hardly needed to use my stick at all to get back to the flat, and the stairs were easier.

£35 well spent.

After lunch and another rest, Pip came over to help me with a little project - the Heart Chart. We went to B&Q and got some Dulux paint cards to make it with. The colours don't seem to have come out fantastically in this photo. They look better to the naked eye in natural light. Yesterday, when she did her scaring the pants off me thing, she was the second from the top on each column. (that's "Bleached Lichen 3" and "Steel Symphony 2"). Click on the photo to see it in more detail.

I gave it to her in the evening and she laughed and laughed and laughed. :)

Thursday, May 25, 2006


I've not been posting because I haven't really been anywhere or done anything or seen anyone. Not even I want to write blog entries day after day of "was in pain. Ate necessary food, did necessary hygiene procedures, bought necessary groceries, got knackered out just by doing these very basic necessary things. Rinse and repeat."

Today I have something to write about though, and that's my mum.

My relationship with my mum is complicated at best. I love her dearly, there's no question about that, but I often feel rejected by her, or as if I've let her down by becoming ill, or like she only really wants me around when I am going to be actively useful to her. Of course she does help me when she can with the barriers caused by my disability and I know I am very lucky to have her on the scene and not living too far away. That said, there is a part of me thinking our relationship may improve once I no longer live in the same town and she won't have to feel obliged to meet any of my care needs at all - once I stop being a "burden" on her. But I digress.

Earlier today I was at her house, being actively useful - I was running my brain into the ground trying to diagnose and fix a problem with her computer. Mum appeared in the doorway and asked me if I wanted another cup of tea, I looked up... and almost fell off my chair asking her to sit down, please.

She wasn't simply pale, she was matching the magnolia walls. Except her lips, which were blue.

I was terrified. I actually was having to check that I had a phone within reach and try and turn my brain around from computer stuff and remember all my first aid stuff, and carefully ask her how she was feeling while remaining outwardly calm and smiling. I don't know how emergency workers do that last bit.

Luckily she's already had a routine ECG (heart monitor) that showed up that she has already had one heart attack, so she has this spray stuff for when things are being worrying, that she's supposed to try first. A squirt of that under her tongue, and a few moments later a tiny bit of colour was starting to come back and I think we both relaxed a bit.

The worst problem is not knowing what the exact problem is or what is to be done about it.

My parents called an ambulance one morning, a few days after mum was told that she'd already had one heart attack and could well have another, on an occasion when the spray didn't help matters. The ambulance turned up, checked her over, established that she wasn't exactly having a heart attack, but her heart was doing something very wrong, scooped her up and took her to the nearest A&E, at the James Paget, where she had a pulse monitor put on her finger, was given a bunch of forms to fill out and was left to it.

Six hours later, she still hadn't seen a doctor, but my stepdad was finally advised that there was no need to get an overnight bag as she wouldn't need to stay in overnight. That was a load of rubbish, mum did end up staying in the A&E overnight - not because of how poorly she was, just because the doctor they wanted to check her over wasn't going to be in until the following morning.

The following morning she did get to see a doctor for a few minutes, who gave her another prescription and a note for her GP and sent her off home. Frankly I wish the ambulance boys had been able to just tell her to make an appointment with her GP - she'd have seen a doctor sooner and been a lot more comfortable in the meantime.

So much for accident and emergency. I think they pretty much guaranteed that mum won't be calling an ambulance for heart attack symptoms again.

Now we're waiting for an outpatient appointment from Papworth, supposedly one of the best heart places in the UK. It's been over a month now and we still don't have so much as a letter saying when the appointment might be, so mum still doesn't know exactly *what* is wrong with her heart, and therefore can't have the most appropriate treatment...

Across the water in Germany, my grandfather (mum's dad) had his tenth angioplasty this week. Apparently there isn't a frequent flyer plan. But my GP has redefined "family history of heart trouble".

All this makes me wonder how it is that my own heart gives the sort of ECG reading that makes the technicians jealous?

Sunday, May 21, 2006


As you might be picking up, I've got a bit of a maternal streak. This isn't just limited to cooing at my friends' children - ever since I was a teenager, I've had an overwhelming desire to get pregnant, have a baby, care for that baby, feed it and clean it and get puked on by it and be woken up in the night by it, watch it grow, teach it, take it to school, help it with homework, tell it off when it gets detention, worry about it when it does something stupid and gets hospitalised, the whole lot. I don't have some romantic idea about a cute baby that I can dress up and feed who will stay tiny forever and can go in the cupboard when I've had enough or have got something else I want to do. I want to create and raise a child.

Being me, however, with ambitions for an education and a career and so on, and also wanting this potential baby to be born (if possible) into a settled family home, with a mum and a dad who have a means of supporting the family other than state benefits, I've also always made a point of practising safe sex, using the Pill and condoms. Result: no babies. It's amazing how efficiently that works.

But now I seem to be at a point where babies are happening all around me and it's playing merry hell with my hormones. I'm only 24, so it's not like my biological clock is ticking, but every time another person announces a pregnancy or waves a scan picture or posts pictures of their baby, I feel happy for them, but utterly gutted that it's not me.

What's more, it's not likely to be me, for some considerable time.

There is no biological reason why I could not or should not have a child. ME is not hereditary, so there's no concerns on that front at all. I am in contact (through ME support groups) with other sufferers who have had babies, and there is no ill effect on the baby for being carried by a mother with the illness. As for the rest of my health... I don't drink, I don't smoke, I don't do drugs other than the ones prescribed to me by my doctor where the effects are well known and documented. I'm under the age of thirty, I eat a reasonable diet, and even on days when I am housebound I do physiotherapy exercises to help keep things ticking over. All things considered, this body is a better place to create a kid than some others I can think of that seem to have managed it alright.

Even once the child is born, I openly and readily admit I would need extra support above that which a healthy mother would need, and I certainly wouldn't be able to hold down a job as well as being a mother. However, I wouldn't need as much help as some people do. And extra thought put in at the "equipment" stage can save no end of trouble.

The problem is that Steve loves me very much and as such, he worries about me. Admittedly even if I was in the best of health we wouldn't be making babies just yet - we've only been together about six months, and we haven't moved in together yet which would be a good first step. But even once we are... he worries about me falling over, he would worry more if I was pregnant or holding our child. He worries about me being in pain, he would worry more if I couldn't take heavy-duty painkillers because I was pregnant or breastfeeding.

I understand those concerns. But I don't know if I'll get better. If I do, it probably won't be much better. There isn't a cure for ME. Meanwhile, I will get older, and he will get older, and becoming first-time parents will get riskier.

Do I have to just give up, at last, on the idea of motherhood?


Nice/Nasty - haven't seen anyone. Very sore day.

Saturday, May 20, 2006

Total Pirate Ship Playground

Total Pirate Ship Playground
Originally uploaded by girl_of_bats.
Yesterday Pip and I took the Littlun to Adventure Island, which is a big warehouse on a local industrial estate that has been converted into a pirate-themed indoor playground, using money from government initiatives and sponsorship from commercial companies, most notably Cadburys.

It was great, and if you click on the picture it should take you to my flickr photostream so you can see more pictures. But even though we were only there for three hours, and even though I wasn't clambering around the play areas or lifting Littlun, or even walking fast or standing for longer than a minute or two, I was just watching the two of them and taking a few photos, it still left me beyond knackered.

I'm just scared that if I stop doing this stuff, pushing my limits to spend time with friends Doing Things, I won't be able to be a part of their lives at all any more.

In fact no, I'm not "just scared". I'm terrified. The worst times of my life are the times when I just physically cannot leave my bedroom and I'm completely alone. The lifeline is knowing that I have friends who *will* come round, make themselves and me a cuppa, and sit on the bed with me chatting quietly in the semidark for half an hour. But if I don't make the biggest effort I can to be part of their lives when I'm capable, then they will have no reason to do this...

But I'm overdoing it, at the moment. And I don't know how to find the right balance.

Nice People:
- Snack kiosk attendant at AI, who despite a b-i-g queue what with it approaching lunchtime, did still offer to help me carry drinks over to where Pip and I had plonked our stuff. (I declined and said I'd make several trips. I'm not heartless.)
- The mum who helped me grab Littlun's lost sock. Why do toddlers object so much to pairs of socks?

Friday, May 19, 2006


Yesterday, oh boy. For starters, it was an awful day for pain and tiredness and mobility. Then I managed to get to my mums (ready to celebrate/commiserate as appropriate the outcome of Davina's first driving lesson) and realised that while I was bundled up in several layers, a big woolly jumper, a coat and a scarf and cradling my hot cup of tea, everyone else was in t-shirts and looking very concerned at me. It seems I am not a well bunny at the moment.

Davina's driving lesson went well, really well, which is great!

Unfortunately Davina's driving lesson was pretty much the only thing that went well in my world for the rest of the day... it was a day of misunderstandings, of bad timing, of unreliable phones, and not even with just one person. It was a big old tangle of grumps and stress and worry spread across several families and workplaces, and not even confined to the UK but bringing in some elements from elsewhere in Europe. I'm not even going to start to try and explain this puzzle ring of Aaaargh and how it relates to me, just take my word for it, it was Not Needed. Especially not for someone in my state...

Which is where HP came in. Poor bloke was only online because he was waiting in for a parcel. Instead he found himself drafted in as my counsellor for the day, to come out with sage advice such as "I'm sure they didn't hang up, their phone just died", "don't be daft, you've been friends for years through thick and thin" and "eating pizza would be a good thing".

And he was right. The person I thought had hung up, had run out of battery, and called me back once they had some charge again, full of "that was the worst time for my phone to go, I'm so sorry..." The friend in question, who I hadn't wanted to bother, called me, and when I started to explain about some of the things that had been going on that day they immediately offered to drop everything and come round, even though they were meant to be having a quiet evening in with their partner (I turned them down on the basis that wrecking their evening would have made me feel worse, but it's nice to know I'm cared about). And the pizza was definitely a good idea!

Thursday, May 18, 2006

Hell of a Day

Honorary Mention: HP, for Services to Wibbling Marybirds above and beyond the call of duty :)

Wednesday, May 17, 2006

Long Day

Paying for it or otherwise, I absolutely had to go into town today to do some banking. The council are supposed to be able to make housing benefit payments directly into an individual's bank account, and I added on my forms that due to my mobility problems and no local bank, it would be really awkward if they insisted on paying me by paper cheques. But, it seems that their preference is to ignore the facility and my request to credit my account directly and instead rely on good old Royal Mail to get a cheque to me each month, get a few days lieu while I wait for a day when I can travel to the bank, and then let me wait for the money to clear through to my account. Because heaven knows I wouldn't want to be planning my finances or budgeting or anything like that.

I've considered making a fuss, but it took them until two months ago to actually agree on what was the correct amount of housing benefit to pay for me. For the eight months before that, directly after I formally left my job (July - I had been off long term sick for a couple of months before that, managers don't like employees passing out several times a day), I was only getting half of what I was entitled to and having to find the other half out of the money that the government says I need to live on. It was a pretty drastic situation to be in, and not to put too fine a point on it, after the amount of incompetence they showed I'm now loath to try and get them to alter things any more than is absolutely necessary.

Rant over. But be aware that I may have more rants about Waveney District Council in the future.

Having done the banking thing, I met up with Pip and the Littlun, who is seriously getting cuter by the day. Trouble is the little monster knows it and is starting to play on it. Still, doesn't bother me - I'm not his mum, I don't have to administer discipline, I'm just auntie Mary who loves getting Big Grins :)

His not-so-cute-but-we-love-him Daddy on the other hand had got it into his head that today would be a good day to buy a new jacket. And not just any jacket. No, he wants a warm, weatherproof jacket, like my winter one, with plenty of quilting inside and nice fuzzy warmness around the collar and the cuffs and so on.

Pip, mate, it is mid May. The shops are gearing up with their summer selections, we are hoping for warmer weather. Space heaters have been swapped for electric fans, Christmas decorations for barbecue equipment, hot water bottles for ice cube trays... and the closest you'll get to a weatherproof winter coat is a Kag In A Bag with a few jumpers and a fleece underneath. I'm sorry.

Luckily I was rescued from trying to achieve this impossible shopping task by Davina, who was having a very boring afternoon that was interrupted by some possibly hopeful news about a different job she'd been looking at. There could only be one response. We popped into Marks and Spencers, bought CAKE, got into Pip's car and went to the place where she works and, true enough, two staff members (including her, and she was managing), and no customers. So we had a little cake-based celebration for ten minutes and then hung about and chatted until a customer *did* turn up.

Knackered again now of course, even despite sleep... but have had CAKE. Mmm, cake.

Nice People today:
- the woman I met at the bus stop and had a chat with, who is incidentally the same woman from last week.
- Member of staff in Poundstretcher who got me a couple of photo-frames from upstairs (I can't manage their stairs, they are too steep and don't have bannisters).
- Ket Fraser at SukoThai, who I haven't seen in a good year or so but still remembered how I like my special fried rice.

Tuesday, May 16, 2006

Still Paying For It

Had to spend the whole day in bed again, except for my bath. By dinnertime I felt a bit better so I called my friend Linda. She's moving house soon and we've been meaning to go out for dinner for ages, so we went to a nice family-friendly restaurant with her little girl Megan. Unfortunately even that was too exhausting for me - I managed to eat but I couldn't make it back to the carpark, Linda had to bring the car round to pick me up. But we had a really nice meal.

She's found a fantastic house. It's a bloody long way away - in Wales, of all places - which doesn't make much odds to them as her husband is a long-distance lorry driver, but it means I certainly won't be seeing them as much! Friendly village, local butcher/baker/post office/etc, gorgeous scenery, it suits her down to the ground. I will miss having her around, but I know she's wanted to leave this town for quite a while and I hope she settles in well.

I'm getting really worried reading in the news about the water shortages and these things called "standpipes". From what I've gathered, if it gets to the point where standpipes are put in, that means water to houses and flats is cut off and you have to go out to the street with bottles and buckets and collect your daily allowance. Frankly I'm terrified about how I'd cope with that. It's difficult enough to manage to go out and get my basic "top-up" shopping (pint of milk, loaf of bread) and carry it up to my flat. I certainly can't carry things up the stairs every day, or even most days. I don't think I'd manage water, at a rate of a litre or so per day to drink, plus enough to wash me, wash my dishes, cook with and so on. And nowhere does it seem to explain what happens about flushing the loo!

Nice people:
-the staff at Tuttles, where we had dinner. Lovely people.

Monday, May 15, 2006

Paying For It

Ow... ow... ow...

Not an action-packed day today, as I am completely messed up from overdoing it yesterday. I've pretty much been in bed, with the laptop, spending far too much time commenting on other people's blogs.

Pip called this evening, came by in the car with the littlun and picked me up and took me back to his for some dinner. It was nice, once the sproglet was in bed, to be able to sit and have a chat between the two of us. Then I got a taxi back home.

The smell in the hallway indicates that Flat 3 has been given some serious cleaning, with bleach. While not the loveliest aroma in the world, bleach is a definite improvement on the odour of cigarette smoke, stale beer, and human vomit, urine and excrement that was previously emanating from that flat.

Tomorrow I'll hopefully be able to potter around the flat a bit more actually doing things.

Nice/Nasty people: I've hardly seen anyone today!

Sunday, May 14, 2006

Flickr meet

Today there was a Flickr meet in Norwich, and I was able to go thanks to much planning and the lovely lovely Jiva not only inviting me but also offering to push me around in my chair.

For anyone who doesn't know, Flickr is a photo-sharing site with community aspects. A meet works in much the same way as any other internet meet-up. You arrange a (hopefully) easy to find, public place and a suitable time. Some people will swap mobile numbers but mostly you turn up at the appointed place and time and look around suspiciously at anyone holding a camera, while trying desperately to remember what people's profile pictures looked like. Eventually you identify a few others from your group, and after a drink and a bit of a chat while waiting for latecomers to arrive, you all wander onwards, in our case to take photos of Things.

I got all my stuff ready last night, so that all I had to do this morning was get up, get dressed, and get outside to wait for the taxi that would take me to the train station.

Problem One: The train station ticket office doesn't have automatic doors. It only has very heavy manual doors. So I had to tap and wait for a member of the public to let me in.

A lady opened the door for me, very good of her. However her next action lost her the place in the Nice People Today List. I pulled out my purse and moved towards the ticket machine - which is perfectly accessible - and she TRIED TO TAKE MY PURSE. She wasn't trying to steal it or anything, she just thought I was too stupid to operate the machine, and that this gave her the right to grab at my stuff "to be helpful".

The meet was fun. There were maybe about 10 or 15 of us, and we had a good time. Jiva was an absolute star, pushing me around almost all day except a little while when Rover75 had a go (Rover, you really should have asked *me* before starting pushing rather than Jiva, but it's a technicality so I'll let it go). We started at the Forum, and then we moved along to some sort of street arts festival thingy, clowns and facepainting for kiddies and alternative dance and so on.

After a bit the group kind of broke up, people wandering off with their cameras to take their own photos, so Jiva and I headed for the nice smooth level surfaces of the Chapelfield shopping mall to get lunch and have a proper girly chatter. I think it was much needed for both of us. Then it was a quick but essential stop at Hotel Chocolat and then getting the Information Desk to order us a taxi back to the train station.

It's amazing how knackered I can get just sitting in a chair all day though. I'm glad I can sleep on trains!

- all the people who held doors open (4 I think)
- the woman who offered to help me get my wheelchair onto the train
- the festival steward who ushered Jiva and me to the front of the crowd so we could watch the clown despite our height disadvantage
- the happy, chatty staff in Hotel Chocolat
- an extra mention for Jiva's chair-pushing efforts, there's a lot of slopes, kerbs and cobbles in Norwich!

- the troll commenter, although I think that may be more "annoying".

Saturday, May 13, 2006

A Different Way

Me preparing to bowl
Originally uploaded by girl_of_bats.
Today I went tenpin bowling with Davina and Pip - that's my aforementioned newly-dating sister and best friend.

I lost, but in all honesty I'd have lost in the days before I got ill, that's not really the point of tenpin bowling with your mates.

The shoes were a great equaliser. Normally I feel very self-conscious about not really being able to wear high heels because of the balance problems, but in the bowling alley everyone has to wear the flat dorky shoes, so that's okay!

The bowling alley provide these ramp thingies for little kids and disabled people to use, that I could line up with the lane, then get Pip or Davina to put a ball on it, and I could push the ball off. My first ball went rolling right down the middle and hit eight pins straight off, and I felt like I'd hardly done anything except watch it. So we worked out a different method.

I'd walk myself to the edge of the lane and stand where I wanted to stand, with my walking stick, and Pip or Davina would bring me the lightest ball I could fit my fingers in (an 8, if that means anything to anyone). They'd position it so I could slot my fingers in, help me lift it onto my chest, and then step out of the way. Then I could attempt to approximately aim, and let gravity do the work of swinging it down on my arm and back forwards.

Final Scores:
Davina 116, almost broke a nail
Pip 104, sore fingers
Me 84, and yes, well...

Edit, early Sunday morning: Nice/Nasty today was a no-score draw, which isn't a bad thing. Remember it doesn't include close friends and family members.

A Dishonourable Mention, though, to the pissheads who come noisily wandering past my flat between 11pm and 3am, fighting each other and smashing bottles and throwing up and singing and incoherently yelling as they go. Okay they weren't actually trying to annoy me, but that's what they do, every time, especially when it's too hot to sleep with the windows closed.

Friday, May 12, 2006

Well, that explains a lot.

My best friend (who at this point I should explain is male, and a single father) and my sister have just admitted to me that, having grown closer over the last few months, this week they "sort of kind of became a couple", and that they weren't sure how I'd feel about that.

Now that they've told me, and I have utterly failed to bite their heads off, they seem a lot more relaxed. We're going to get together tomorrow and see what we feel like doing.

The only potential problem I can see with this is that both of them have a tendency to tell me about their respective sex lives, and I really desperately don't want to end up with loyalty issues, confidentiality issues, or downright "ew" issues concerning either of them.

On the positive side, at last he has a girlfriend, and she has a boyfriend, that I can completely approve of!


Fairly bad day today, with extra salt for wounds.

Mum had wanted me to go to her house so that I could supervise her decorating. That sounds kind of daft, but the thing is she's not in the best of health herself, so we have this agreement whereby she doesn't go up ladders and so on if she's alone in the house. The days are gone where I can go up the ladder on her behalf, but at the very least I can be in the room, pass her things, help or call for help if some sort of accident should happen, and indeed be a little bit of company... it's a little bit of usefulness I've still got.

Except on days like today where I was audibly yelping as I tried to move first thing in the morning. I had to phone and let mum know I couldn't get out of the flat, and doing that always feels like such an admission of failure.

A full burst of painkillers and some meditation let me get into a hot bath for a soak. I'm lucky that my bathtub at home has grab rails on the side, so most days, with a bit of effort, I can get in and out of it unaided. That said I have given myself some nasty scrapes and bruises doing this, and even knocked myself out a couple of times, so I always have my mobile phone on the bathroom floor in case I end up having to call for help. Showers are beyond my capability, I can't stand up for that long.

(By the way, please excuse the detail I go into about my day-to-day lifestyle and difficulties in these early postings. I'm trying to lay the foundations, if you see what I mean.)

Wrapped up in a towel, I needed a sleep to recover from the exertions of having the bath, but by 2pm I was air-dried and feeling mobile enough to shuffle over to mums, where I got my cup of tea and mumsykins made her way up the ladder to start removing curtains with an air almost of joy. And all was okay with the world for about ten minutes.

Then my sister phoned.

She'd finished her shift at work and was going to spend the lovely summer afternoon in town with her best friend, my best friend, and their respective babies.

Now please don't misunderstand me. On a day like this, if I'd finished work at 2pm, I would want to enjoy the weather with friends. I'm pleased for my sister that she can do this. Just like I'm pleased for her that she can have a job, earn her own money, dance, go out every night, learn to drive, all the things normal girls our age do. This is not me having a problem with *her*.

However, no matter how noble I try to be, there is a bit of me kicking and screaming and shouting "It's not fair! What about me?! Why are you always doing things without me?! Why do I always have to be left out?! I want to be part of the group! I want to enjoy friends and sunshine! Where did my life go?!" Sometimes I'm a smidgen from vocalising it, except it would upset her no end and that's the last thing I want to do.

I made some jokes about how both her friends had dependents to push and now I had my own wheelchair, if she felt left out she could borrow me, we could get me a dummy but I wasn't wearing a nappy for anyone, etc etc etc blah blah blah... got off the phone and burst into tears.

They don't mean to reject me, but they do, again and again. And these are the people who still find time for me now and then - there are many people who I have tried to keep in phone and email contact with who know where I live and keep saying they will come round some time, but haven't, not since I got ill.

Mum understands, I think, for a lot of it. Her own health problems mean she can relate to a lot of the disability issues. But even for her, she went to university, she drove all round various parts of Europe in her little VW Beetle, she worked, she got married and had kids, before things really impacted on her lifestyle. I've yet to find someone who can relate to the exact nature of suddenly getting an unexpected long-term illness that utterly turns your life upside down when you're only just turning 23. One minute, life ahead of you. The next...?

So this afternoon, while my sister and my best friend hung out together in the sunshine, I walked slowly and painfully from my mums house to my flat, stopping at the chemist to pick up another carrier bag of prescription painkillers, and now I'm alone, in bed, as usual.

- The man in the Capps Food van who was stuck in traffic and smiled at me as I walked past.

Thursday, May 11, 2006


So it took me until lunchtime to actually get all limbs functional, but functional I got, and then dressed, and then on the right side of a cup of tea, and started shuffling about. It's not been an action-packed day, but I did meander down to the bus stop and get a bus into town, where I got a train timetable and picked up a memory card for a friend and had an ice-cream from Thorntons.

Time was I'd have done those things on my walk into work, now I need a sit-down between each bit and to go home for a sleep afterwards, even on what's been a reasonably good day.

About 3pm I got really knackered. That's another peculiar thing about ME - you feel exhausted straight after doing something, sure, and then you have a rest and feel, not all better, but a little bit better, and then about 24-48 hours later it totally knocks you for six - not just your energy levels but your pain and your movement and your speech and your cognitive abilities and your mood. I think this was me paying for the wheelchair experiments yesterday, trying to mess about propelling it myself and all that. The pattern is commonly referred to as "boom and bust" and people with ME do it a lot, overdo it one day knowing they will pay for it with interest later. It's something I really should avoid doing though. It's okay doing it occasionally, but it's not recommended as a way of life.

There's no way I could have cooked myself dinner in the state I'm in this evening, not even a microwave meal. I drop things and I forget what I'm doing and all sorts, plus the aforementioned cognitive/mood problems mean I probably wouldn't have managed to choose something and eat it. Luckily my mum and stepdad live just a very little way along the road, so I took a slow shuffle to their house and had dinner with my parents. They're great like that - if I'm a wreck they still make sure I get at least one hot meal a day somehow, whether it's eating at theirs, or them coming to mine and heating something up for me, or even as simple as talking me through ordering takeaway food to be delivered to my flat (yes, sometimes I am that out of it). I'm very lucky to have family.

Tucked up in my bed again now, all nice and cosy. It's about 9pm and I've had a little nap, I'll probably stay put in bed with the laptop for the rest of the evening though. There seems little point in getting up and about just to potter around the flat by myself for a couple of hours.

I want to go rollerskating on the promenade along the seafront.

In other news: About a month back one of the tenants in the flat block here earned himself the nickname "Mr Shitty" by crapping himself, getting his crap all over his clothes and hands, smearing it all over the downstairs hallway, creating havoc and shouting a bit, and then tottering off to buy more Special Brew (that last bit he does every morning anyway). Seriously - I was taking photos of the shit-smeared hallway to show my landlord and ended up also taking a photo of this shit-smeared bloke with his carrier bag of cans of cheap booze, I can't imagine who served him in that state. Turned out this guy had faked references to get the flat and all sorts. His family came and cleaned off the mess from the hallway, and there's been repeated dettol, but the smell still emanating from his flat is just something else entirely. However today I learned that he's been served an eviction notice. Maybe now he'll get the help he needs.

- The woman at the bus stop who I ended up having a chat with.
- The assistant in Thorntons who gave me a smidgen more icecream because I said I didn't want a chocolate fudge stick.
- The recently retired chap who lives in one of the flats downstairs and is using his own time and money to try and make the back yard here a bit nicer, buying little plants for the earthy bits and so on.
- The driver who stopped and waved me across the road on my way back to the flat.

And obviously my parents... but my parents are nice to me every day. So is Steve. Often my sister is nice. And my friends. That's not really what the Nice List is about. I know I'm loved. This is more about people who aren't actually part of my life doing things they don't have to do.


On Bodily Bits and Waking Up

Waking up each morning is one of the worst parts of my day to day life. It's better when Steve is with me - cuddles on tap, a cuppa if I want one, and if necessary he'll give me any physical help I need to get to the bathroom and so on. The man is an angel. But most of the time, like today, I'm on my own.

The first thing that courses through my mind each morning is a large and intense level of all-over muscular pain. I have to spend a while doing breathing techniques while concentrating on each set of muscles to relax them. It's usually a while before I even have enough mobility to lever myself into a sitting position and take a painkiller.

But I sleep about 10 hours at night. What do you think is preying on my mind as I get to grips with the pain levels? I have to journey the two metres to the bathroom. While I don't intend to go into huge detail, it can be tricky to do relaxation and breathing when there are other more urgent matters pressing for attention...

Next up is to work out what body parts I have control of. Today is not a *bad* day, but a very annoying one.

I'm missing most of my left leg right now. That's not too much of a problem. It's still there, I can see it's still there, I just can't happen to feel it or really move it this morning. So I can either crawl the two metres to the bathroom, dragging the leg, or I can walk it by kind of throwing my leg forward from the hip and then moving the rest of me. ME involves balance problems though, and I don't feel like bruising myself yet today, so I opted for crawling, so now my knees are all red.

I'm also missing my right thumb, and if anything that's worse. Seriously, it's not even like having your thumb tied to the rest of your hand, cos then it would be out of the way. No, it's dragging on the keyboard and the laptop trackpad and getting in the way, and I'm having to try and do stuff left-handed. My typing is shot, picking things up is an exercise in frustration, and I know that when it comes back it'll be with HARSH pins and needles.

It's a beautiful day outside, which I can't partake in yet because I'm not opening the curtains until I have clothes on and I have enough trouble putting clothes on with two working hands with opposable thumbs, and grumble grumble grumble grumble RANT!

I have this idea about, when I live with Steve, how I could make him sandwiches to take to work in the morning like a little wifelet.

I also have this idea about having a board and a loaf of bread and a little portable fridge and a butterknife in the wardrobe, so that I would have half a hope in hell of accomplishing sandwiches before he actually had to leave for work...

Wednesday, May 10, 2006

My Shiny New Wheelchair

mine mine mine and better than any of that rental crap.

This pic taken by an obliging passerby who was giving StickCam funny looks, not to mention my antics as I got to grips with the chair.

It cost £295 (*gasp!*) but oh, it's lovely. Super-lightweight, easy to take apart, all the adjustable, extremely comfy, very stylish...

Of course it is still a wheelchair.

I would very much rather not be using it.

And when I'm not accompanied by someone who can push me, then frankly the stick is easier - I can lean on the chair in much the same way as one would lean on a zimmer frame, and it's lovely to sit down when you like (as I did today when I took it home via the beach), but you don't half get funny looks when you lever yourself out of a wheelchair with a walking stick and then start pushing the chair.

BUT, all that aside, having my own chair is a big part of acceptance. It will make a lot of things a lot easier, for myself and for the people who worry about me. I know my sister for one would rather push me in a chair round the shops, than watch me slowly limp along in pain before crumpling in a heap of tearful requests for some painkillers and a taxi home.

-The staff at the mobility place, who cheerfully talked me through every option on wheelchairs and then when I'd chosen one, sat with me practising taking it apart and putting it together.
-The female customer in the "Thatched Cottage" cafe on the seafront who left her place in the queue to help carry my tray to a table for me.
-And the man who saved her place in the queue.
-The elderly couple who struck up a conversation with me about learning to use a wheelchair, and kindly took this photo with StickCam.


First Post

Okay, here I am, writing a blog.

I'm not sure why someone who spends most of each day napping and has very very limited mobility and energy would feel the need for a blog, certainly if you want thrills, spills and excitement this isn't the place to be - but hey, I can blather on here to my heart's content.