Wedding: the Aftermath

There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:

• I do something active.


• I feel tired, often rather more tired than the activity warrants.


• I have a rest.


• I feel, not 100% better, but significantly improved.


• I carry on with my life.


• ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.

The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.

First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.

We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.

My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.

That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.

One month on and things that are done include:

• We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.


• We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.


• I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.


• We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.


• We've had some of the photos back and have been able to print ourselves some copies to show people.


• We've given or posted all of the thank you notes.

We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.

I also need to do another blogpost or two about some of our vendors who really were exceptionally good.

And then the rain came down

Things have suddenly become Busy here in the land of Mary. Let's see, where were we up to...

The Second Job has started and is going well. Access to Work agreed that I should have an ergonomic keyboard and mouse, which I bought and they should be refunding at the end of this month. I also explained about how I would be mostly working at home but would occasionally need transport to go to what you might call Company Headquarters, in order to be shown how to do things, or given materials to work with, or to speak to my manager in person. So instead of being approved for "up to 10 journeys a week" (eg five trips To and five trips From work) like I am for my main job, I've been approved for "up to 104 journeys a year", which on average is a To and a From each week, but acknowledges that my working pattern is very, very flexible.

I had a second attempt at the chocolate cornflake cakes, this time using proper dark cooking chocolate. It worked much better than my Galaxy/cocoa powder/water combination. I'd show you a picture, but we ate most of them at knitting night. It probably would have been all of them but we felt we should save one or two for Steve. I would like to thank the ladies for sincerely congratulating me on my achievement without any sniggering.

I got my Direct Payments Monitoring Return completed and sent off. The stamped printout of the transactions for the period covered by the missing statement never did arrive - no idea whether that's the fault of the bank, or the fault of the Royal Mail, although I know which I think is more likely - so instead I made copies of the wage slip and BACS slip for that month and added a post-it note explaining that the statement was lost in the post, but this is what went in and out of the account and look, it tallies up with the end balance on the previous statement and the start balance on the next one. I'm sure they'll contact me if that isn't good enough.

So yeah, all in all I was feeling pretty proud of myself for keeping on top of it all and having everything ticking over.

And then the rain came down.

In among the self-perpetuating drizzle of increased pain levels because of the damp and cold, and grottiness because of increased painkiller side-effects, and getting frustrated and stressed because the grottiness makes it hard to think and the pain makes it hard for me to move so I can't DO things, and extra pain because the stress makes me tense, round and round and round, are a couple of real thunderclouds.

Firstly, my PA told me of a couple of issues that may affect her ability to work for me. I respect her confidentiality as I expect her to respect mine, so all I'll say on that front is: she's a great PA, I'm happy employing her, she's happy working for me, and it isn't anything that either of us have "done wrong", it's just one of those things. But what I can say is that, as an employer, I'm having to increase the gradient of my learning curve to perilously steep levels in order to keep up with what our respective rights and responsibilities are in this situation. I'm also having to spend a few extra hours on the phone and having meetings during the daytime, which interferes with my ability to save enough spoons for work.

Secondly, it's DLA time again. The form is a new one - shaved down to 40 pages of personal and depressing questions rather than the 50+ it was previously - but from what I can see, this has mostly been achieved by trimming down the spaces given for the non-tick-box questions. For instance, the question about help needed to take part in "hobbies, interests, social or religious activities" used to be close on three pages. Now, they provide two 5cmx16cm boxes, one for activities at home, one for activities when you go out. Which I guess is more than adequate if you don't need much help, but if you don't need much help, why would you be applying for DLA?

So Monday evening will be spent trying to contact the Citizens Advice Bureau by telephone (the local CAB is only manned four days a week, for five hours at a time, most of which I am at work). I'm hoping my combination of disability and having a job will be enough for them to allow me to make an appointment. Obviously I'll have to take time off work for such an appointment, but it would still be much better for me than the usual process where you go to the office and sit in the waiting room for however many hours it takes until someone becomes available, and if they don't become available, you come back the next day. It's not the fault of the CAB, who are staffed by volunteers and chronically underfunded for the amount of support they are meant to provide. But it does make it that little bit more inaccessible for those who need it, and it's another thing that shouldn't be soaking up my limited annual leave allowance.

Every time, this makes me angry. Services and support tend to assume a disabled person has an infinite amount of spare time, energy, money, learning capacity, and administrative ability at their fingertips. Get off benefit! Go to work! Squeeze all this crud in on top! How?

DLA and AA under threat

Yesterday Benefits and Work released some rather alarming news about the proposed axing of "disability benefits", such as DLA and AA. To bring all readers up to speed:

DLA is Disability Living Allowance. This is money paid to disabled people to help cover the additional living costs they face due to disability. It has a Mobility component and a Care component. These are paid at fixed rates (high or low rate Mobility, and high, middle, or low rate Care).

AA is Attendance Allowance. This is sort of like DLA for people over 65, but it is not split into care and mobility - there's just a single high or low rate.

Neither benefit is means-tested for the simple reason that being disabled is expensive regardless of what other income you have. If you work your backside off and earn £20k, you deserve to be able to live the life of someone earning £20k - not to be struggling along in the lifestyle of someone on £12k because you have to shell out a small fortune for absolutely essential, non-negotiable disability expenses. You shouldn't be rendered ineligible for help with these essential expenses because you've had the gall to do things like get a mortgage to buy a house, or put a bit of money in an ISA for a rainy day, rather than spending all your money as it comes in.

Neither benefit is counted as income for means-tested benefit assessments, because the money is given because of additional disability-related expenses, the sort of things where the individual can't choose to save a bit of money by going without.

No one is immune from disability or old age. These issues might not affect you today, but chances are they will affect you at some point, particularly if you plan to live past 65.

All up to speed? Then I'll continue.

The reason DLA and AA are given as money and don't require receipts and suchlike to prove how the money was spent, is because of the huge diversity of disabilities and living conditions it covers, and because the expenses don't always work out that neatly.

Let's explore an example: grocery shopping. I have to pay more for my grocery shopping than an able-bodied person.

First of all, I have to pay for home delivery. I rarely have the spoons to manage to get all the way around a busy, bright, noisy, complicated supermarket, even with a mobility scooter - much less to then be able to get myself and my shopping home, and then immediately put it all away as well. To someone with a condition that makes moving about painful, who has difficulty lifting and carrying, who becomes tired very quickly, or who is easily confused, that's a triathlon.

Second, I have to pay to be able to access home delivery. That means an internet connection and a usable computer, repairs and replacements as necessary. Of course I use the internet and the computer for all sorts of things, essential and otherwise. How on earth would we calculate how much of it is a disability-related expense?

Third, I cannot save money on shopping around. Home delivery usually has a minimum spend. Every week, leaflets of special offers from the main supermarkets come through my door, but I don't have an option to get £10 of food from ASDA and £10 from Tesco and £15 from Sainsburys. I have to pick one shop. I cannot pick the cheapest shops, such as Aldi or Lidl, because they do not deliver.

Fourth, shopping online I cannot take advantage of the "benefits buffet", the items that have been reduced in price in-store because they're almost out of date, or because the packaging's been a bit squashed. It used to be a core money-saver - on my walk home from work, I'd wander into the supermarket and pick up something half-price for that night's dinner...

I had typed as far as my ninth point before I realised I'd gone a bit off course and deleted most of it. Hopefully I've demonstrated my point: disability-related expenses crop up in unusual ways and aren't always possible to calculate - which is why getting DLA or AA in the form of extra money to be spent at the claimants' discretion is utterly invaluable.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

This will Not Be A Good Thing.

Worse, they intend to give the funding and responsibility to Social Services instead. The examples of Social Services that are unable to find their backsides with both hands and a map are myriad, but even if we were to grant them the impossible benefit of the doubt and assume that they ran it fairly and smoothly... this change can only mean less autonomy and more paperwork for elderly and disabled people who are not always in a position to be able to deal with it, as they attempt to document and justify every disability-related expense that the local authority will permit (and struggle with the ones they won't acknowledge).

Please, join the campaign at Benefits and Work.

Developing Specialist Skills

Speak to someone who acquired a disability and has had it for a few years, and there's a good chance they'll be keen to make sure you know it's not all bad. In fact, those of us who are a bit more... excitable... about the whole disability/equality issues "thing" (I include myself in this group) have perhaps a bit too much propensity to shove a firework of Positive Empowered Attitude up the backside of anyone suspected of misplaced sympathy or tragic admiration.

Part of this is sometimes to assert that you have learned things or gone places or met people that you wouldn't have done had it not been for your cripdom. But all too often these are either speculative (who's to say you wouldn't have met your wonderful partner if you'd remained walkie-talkie? who's to say you wouldn't have met someone else just as wonderful?), hard to quantify (how do you measure insight?), or irrelevant to a nondisabled audience (wheelchair breakdancing is impressive, but doesn't really connect for someone who's never used a wheelchair themselves).

But finally, today, I realised I had a definite, quantifiable skill, born of my disability and yet noticed and envied by a nondisabled person - my PA, who gazed at me with a baffled yet admiring look and asked "how do you DO that?"

I can shop. I can shop fast and yet I rarely have anything that I regret buying once I've got it home. I can spot a "possible" item from across the store, and once I'm closer I can very quickly assess whether it meets my requirements and whether I think it is worth the price on the tag. If yes, then I'll buy it (except in the case of clothes, which I still insist on trying on first - but only for fit, I'm always confident about whether or not it will suit me). If no, I'll put it down and forget about it.

It's probably a combination of all sorts of things, for example not wanting to waste my precious three hours by faffing about, not wanting to spend more spoons than I have to on any given activity, and having had the same tastes and 'style' for years. If wandering around the shops and trying on clothes was still a pain-free activity, I'd probably be doing a lot more of it. Disability has stopped me dithering.

Admittedly it is not a skill that will save the world - most things don't. But it's a knack I'm pleased to have developed.

Did you ever have a couple of days when things just went... right?

It started on Tuesday, worryingly enough with the laundry. Anyone without a tumble drier will understand where I'm coming from - I have enough space to hang up to dry all the clothes that I wash, but the things like towels and sheets cause a bit more of a problem unless you (1) don't care about your heating bill, (2) have the space and strength to wrangle with acres of heavy, damp cloth and (3) don't mind a climate inside your house that is similar in heat and humidity to a tropical rainforest.

So I decided that a graceful admission of defeat was called for, and looked into laundry services. I knew of service washes and I figured that although taxis to and from a laundrette would be expensive, it would get it done, one-off expense, and that would be that. So I made some phone calls.

Ten minutes later and an arrangement had been made for someone to come to the house after I'd got home from work, collect two black bin-liners full of laundry, and bring the contents back, clean and dry, at the same time the following day. Simplicity itself.

Off to work, where I had a busy and productive but thankfully not too awfully hectic afternoon. More and more Christmas-themed things are being ordered. At the end of the afternoon, I finished everything that wanted doing, made my way down the stairs, and reached the bottom just as my cab arrived to take me home.

At home I relaxed for half an hour, then a polite young man collected my laundry, then about ten minutes after that Steve got home, bearing fish and chips. Delicious. That consumed, it was time to go to knitting group for the rest of the evening, where I had a great time chatting with my friends and making steady progress with my current project (Christmas present, sorry). A couple of hours later Steve came to take me home and then I snuggled into bed with a heat pack and a good book. Hot chocolate was offered, but I didn't think I'd stay awake long enough to drink it.

You'd think it couldn't really get much better, and so I may have approached Wednesday with some trepidation. Wednesday, being my day off work, has a horrible tendency to become a Busy Day as I cram in all the stuff I haven't been able to do during the week (I'm home in the mornings, but I can't go out and get stuff done as I have to save my spoons to be able to go to work). This week was looking particularly harsh as it was going to entail a trip into town which is sometimes a real adventure. I braced myself and called Shopmobility to check availability of scooters (I didn't have the spoons to drive my own all the way into town and back) - no problem, a scooter will be ready and waiting. Called a taxi to take me into town, taxi was outside my front door within five minutes.

It was like falling through a door that you expect to be heavy and then someone on the other side opens it before you realise.

First task was to go to the post office to post a thank-you present to the charity which supported me with my DLA appeal. There was no queue, just straight to the desk and sorted.

Second task was to go to the building society to transfer the big lump of DLA back-pay (the money they should have paid me over the nine months leading up to the appeal) into my ISA. No problems whatsoever.

Third task was to go to Boots and fill my prescription. A fifteen minute wait was about normal, I sat and relaxed for some of it and got a bit more knitting done with the rest. The pharmacist was thoughtful enough to bring the bag over to where I was sitting rather than shouting to me, which was nice.

Finally, I had to go to a bank to set up a new account in order to use Direct Payments to hire a Personal Assistant for a few hours a week as per my Social Services assessment. It must be a new and separate bank account so that the payments are transparent.

To briefly explain: DLA is money I get in recognition of the fact that I have various additional expenses due to my disability. I get £46.75 a week for Mobility. But no one cares whether I use it all for taxis, or whether I use some of it to repay friends directly or indirectly for giving me lifts, or whether I count shopping delivery charges, or whether I blow it all on cat food. It's up to me how I spend it - or indeed if I save it. Direct Payments, however, is more like reimbursement of a Personal Assistant's wages. So I will hire my Personal Assistant and I will pay them, and Social Services will give me the money to pay them. However, all of this money must be directly accounted for. If I've been granted 10 hours of care, but I only use a PA for 5 hours, then I will only get the payments to cover 5 hours of care. So there has to be a dedicated bank account for these payments to make sure everyone involved can easily keep track of what money should be and is going in and out at any given time.

The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA...

Anyway, it's a task I've been sitting on for a couple of months now, waiting for a day when I had enough spoons AND enough time AND during bank opening times, to be able to try and tackle it by myself. I admit, I was also a little anxious about whether a bank would let me open an account when I don't have a driver's licence or a passport, and I can't say how much money will be going in and out of the account, or when.

But today, ah, today I was charmed... I picked a bank on the basis of "first one I saw", mosied in, explained I wanted to open an account and was told someone would be with me shortly. Shortly enough, someone was with me, ushering me into a private room and offering me a hot drink. Opening an account? No problem! Your wages won't go into it? No problem! Chequebook, no fees, no problem! No passport or driver's licence? Well, I'm sure something in this sheaf of documentation you've brought along will suffice... WIN.

It got better. Steve came to meet me for ten minutes in his lunch break, which meant that not only did I get extra bonus hugs, but I also got to offload the enormous bag of medication which was starting to get in my way. I found a quiet restaurant with a decent lunch offer (a main course and a drink for £8.50) so I decided to treat myself. Then I started to make my way back to Shopmobility via a couple of shops and found (1) a nice top and (2) a book from a series I'm collecting which was reduced from £6.99 to 50p because the cover had got slightly torn. Dropped off the scooter and made my way to a nearby bakery where I had a cup of tea and a chocolate fudge brownie while waiting for a taxi to pick me up and take me home.

But we're not through yet! There was post waiting for me at home - I've been invited to another interview, which is nice, although I know better than to hold my breath. They want my permission to contact my current employer for a reference, which is fine, but I really should give my current boss a heads-up first.

And finally, to round it all off, the guy from the laundry brought back two big bags of nice, clean, dry, folded towels and bedclothes, and that was when I discovered that the price he'd quoted me wasn't per-bag but for the whole lot, so it only cost me half of what I was expecting! The amount of pain and hassle it saved me is phenomenal, so I expect I will be using that service a lot more in the future.

More days like this, please.

DLA Appeal

Appeal was today. It went well.

It was a bit daunting, but the panel made an effort to put me at my ease, asked sensible questions, and paid attention to my answers. I was able to answer all of the questions that were put to me, clearly and consistently. I also introduced the panel to Spoon Theory.

I got awarded High Rate Mobility and Low Rate Care, which is about right. We had thought I might get Middle Rate Care, but frankly I'm not going to argue about it. The award is backdated to February 2008 (which was when I applied) and is for two years from that date, until February 2010.

Absolutely knackered now.

Mind the gap

So, over the last few months there's been a bit of a dip in my health, and work isn't getting any easier. Okay, so work isn't meant to be easy - if it was, they wouldn't have to pay people to do it. But this isn't "work knackers me out so much I can't go clubbing," this is more "work knackers me out so much that half the time it's hit-and-miss whether I can manage to have a shower, even with assistance," and that's really taking things too far. Of my daily "spoons", I'm prepared to hand most of them over for work, but I do need a few left for attending to my essential personal care needs, my bits and bobs of housework, my relationship with Steve, my friends and family, and - dare I suggest it? - a little bit of leisure activity beyond lying in bed sporadically knitting or poking at a laptop computer in between waves of pain. And I really should keep a couple of spoons in reserve for emergencies (like unconscious boyfriends, or mornings at the CAB).

For the last few months, I've been spending spoons I don't have, and reclaiming them by using my annual leave for days off work to recover. That's not sustainable. For starters, I don't have that many days of annual leave, and besides, that's not what annual leave is for. My boss, who is very nice, encourages me to take time off sick if I need it and I have taken some sick days, but I don't want to screw over him, the company, or my own sickness record, by taking a paid sick-day every week. But by pushing my limits like this, I am damaging my health in the long and short term. This cannot continue.

Solution: reduce my regular paid hours, for reasons of ill-health - work four short days a week rather than five. My boss is amenable to the idea; however, now there is a new issue. Since I am on a very low hourly rate, dropping this many hours will mean I no longer earn enough to be paying National Insurance.

National Insurance is very important. If you haven't paid enough National Insurance contributions ("the stamp"), you can't get benefits such as Incapacity Benefit or a state pension. When you have a long-term health condition, it's important to keep this safety net in place. If you are unable to work and claiming Incapacity Benefit, your stamp is paid. If I asked my doctor to sign me off as sick, and I stopped work altogether, I would automatically go back onto the rate of Incapacity Benefit which I was on before I started work. My stamp would then be paid and I would be financially "safe".

But I don't want to stop work altogether, and my doctor agrees that I don't need to stop work altogether. I just can't safely continue working this many hours without damaging my health. I fall into a kind of No-Man's-Land. I looked into voluntary National Insurance contributions, but at £8.10 a week that's out of the question - my earnings would be reduced to below-benefits-level because of working less hours, deducting another £8.10 a week on top of that just makes the whole thing silly. Who should I call to help figure this out? Roll call!

My boss continually assured me that as soon as I knew what I needed from them by way of adjustments, he would get it sorted out for me.

My doctor said she didn't know what the rules were - her specialist field is medicine, not employment, tax or welfare - but she assured me that she would support me with whatever I needed and offered that if necessary she would write me a very specific sicknote detailing that while I needed to work reduced hours, it would be detrimental for me to stop work entirely.

The Incapacity Benefit helpline took a while to understand that I didn't want to stop work completely and then told me they would get back to me with an answer (they never did). They also recommended I call the Disability Employment Adviser (DEA) at my local Jobcentre.

The local Jobcentre DEA, who we've met before, didn't even attempt to help me find a solution when she finally deigned to call me back, but gave me an earful about how "Incapacity Benefit is not a lifestyle choice just because you feel like working less." Happily this is the level of supportiveness and understanding that I have learned to expect from her, so after a few minutes I gave up on my efforts to explain that this wasn't about "choice" or about how many hours I "felt like doing", nor about an effort to "boost my income with benefits", and just let it go.

The local Jobcentre Incapacity advisor said much the same.
"You can work less hours and make voluntary NI contributions."
"But if I work less hours, I will have less money, and not be able to afford NI contributions."
"You can claim Tax Credits if you are poor."
"No, you can't claim Tax Credits if you work less than 16 hours a week."
"oh yes... well, your partner can claim Tax Credits on the basis that he has a low income and a dependent with a long-term health problem."
"My partner's a contractor, we'd have to fill in a new set of forms every week. Besides, it's not that we're poor as a household. It's that I want to pay my own way. I want independence, not to have to rely on him for handouts."
"Benefits isn't independence. Work is independence."
"But I'll be better off on Incapacity Benefit."
"I never said that..."

The CAB told me to contact the doctor, the IB helpline and the DEA at the local Jobcentre. When I said "done that" they were pretty much out of ideas and that I probably had no option but to give up work entirely. I told them I was waiting for a call back from Remploy. They said that was my best bet, then. Oh good.

The bloke from Remploy suggested that if I got back onto Incapacity Benefit, then I would be allowed to do Permitted Work. People doing Permitted Work keep their IB, and can work up to 16 hours and keep up to £88 of their earnings each week. But except in special cases, this is only for six months (after which you either go to full-time, or stop work completely).

I asked if there was a route that was more 'sustaining employment' than 'starting employment'. He told me that New Deal for Disabled People (NDDP) is being phased out and replaced by something called Pathways to Work. Pathways to Work have been active in my local area for about a month via a private company called Working Links. According to my Remploy chap, the staff at Working Links are fairly new to the game (obviously, since they've only been here for a month) and they took over a week to get an answer to him regarding my situation. The answer was that eligibility for help from Pathways to Work is dependent on having been on Incapacity Benefit for the previous 13 weeks. Which I haven't been. I've been working. So I can't have any help, unless I'm prepared to spend a quarter of a year being completely unemployed again and then hope that I can get my job back.

That's not helpful.

The biggest help so far has come from my boss and the company accountant. We've worked out the minimum number of hours I need to work to retain my NI contributions and that is how many hours I will be working as of this week. We've had to tweak a bit, basically from now on I will only be going in four days a week (giving me Wednesdays to recuperate as well as Saturdays and Sundays), but working an extra half-hour on those days. We'll have to see how well it goes. It's still more hours than my doctor and I think I really should be doing but at this stage it's better than completely giving up work.

Here's my options.

Option one: work 17.5 hours a week. National Insurance contributions paid. Take-home pay of about £88 a week, after tax, NI, transport costs etc. Working more hours than my doctor thinks I should. Precious few 'spoons' left.

Option two: work 12 hours a week. Take-home pay of about £57 a week after voluntary NI and transport costs. About the right number of hours work for my current state of health, and enough spoons left over to attend to basic daily needs (eg mountain-climbing: no, grocery shopping: yes).
Edit: I have been informed in the comments that voluntary NI counts towards one's pension, but is not counted for an Incapacity Benefit claim.

Option three: stop work and go back on IB. National Insurance contributions paid. Take-home pay of about £85 a week. All of my time and spoons to myself. However, no colleagues to chat to, no work goals to accomplish, no acceptable answer to the question "so, what do you do for a living?" and precious little self-respect.

What would you do?

Urrrrgh

I have Extra Lurgy. Yep, on top of the usual, I've caught one of the glorious bugs that are floating around at this time of year, and I'm feeling crap. Coughing, wheezing, feverish, glandular, snot-ridden Crap. The last couple of nights have been increasingly bad in terms of sweaty-shivering unpleasantness, and last night in particular was just short bursts of sleep in between painkillers and needing another drink of water.

Luckily (although I'm not sure that's precisely the word I'm looking for), it's the weekend, so I'm able to be mostly in bed. I have a good supply of various strengths of painkillers (advantage to chronic illness), I have plenty of Strepsils, I have some Olbas Oil and I have a couple of boxes of tissues. I also have a Steve, who is slightly concerned and fussing a little - but mostly in terms of running me a bath and making me cups of tea, which, you know, I'm really not complaining about.

What is worrying me is tomorrow, when I am supposed to be at work for four hours. Usually when I've been bug-ill on top of everyday-ill, it's been a case of curling up in bed until it's gone. Now I'm working, that's not an option.

I really, desperately don't want to take time off sick.
I really, desperately don't want to make myself iller again in the long-term sense by not allowing myself a chance to recover from this virus (that's the most likely thing that made me long-term ill in the first place).

I don't want to let down the people I work with by being unavailable at the busiest time of year, making them do my share of the work.
But I also don't want to turn up at the shop, do half an hour's working, then pass out, and make people not only have to do my share of the work, but also make them have to spend time fussing over me, making sure I get home safely, writing it in an incident book and god knows what else.

Hopefully I will have intensive rest today, a much better night tonight, and feel better enough in the morning that I can dose up at lunchtime, go to work and just say "look, I'm going to have to be a bit careful today," but still be more or less functional for those four hours.

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In other news, Reynolds at Random Acts Of Reality is having a competition to win some books. I've had no ideas as yet.

Activity, cost, and Spoon Theory

One of the trickiest things to keep on top of is calculating the costs of each activity I do, prioritising the activity, and figuring out if I can do it or not.

The beginning and end of the spectrum is easy. There is "rest", which is lying down or sitting very comfortably, in a warm, safe and quiet place, with my eyes shut and no distractions. It may or may not involve actually falling asleep, but the important aspect is making the time as uneventful as possible for both my brain and my body. Rest helps me slowly gain some energy.

At the other end is "impossible activity". A few years ago it was perfectly feasible for me to rollerblade along the seafront with an ice-cream in one hand and be chatting on my mobile phone in the other. These days, I simply do not have the capacity to do that, which is something I've come to terms with. It was fun, but hardly a life skill.

The bits between "rest" and "impossible" are tricky though, and they vary for every person with ME/CFS and similar illnesses. For everything I do, I have to think about how much it will cost me, and whether that will prevent me from doing something else that may be more important or more enjoyable.

Let's take reading as an example. I've enjoyed reading from a very early age and it used to be one of my top things to do to relax. Now I can't read any whole book at one sitting any more, fair enough, but there's more to it than that. These days, reading isn't just reading.
Low-cost: Reading a book from my personal collection which I have read many, many times before.
Medium-cost: Reading a book I have not read before, but by an author I am familiar with and whose style of writing flows well for me.
High-cost: Reading a book by an author who is new to me.
Near-impossible: Reading a non-fiction book which requires the reader to keep up with concepts that may be new to them. For instance, I've had The Science Of Discworld for about a year and I am still less than halfway through it.

The same sort of thing applies to everything I do during a day, fun or not, essential or not, productive or not. It applies to getting up and having a bath and getting dressed and washing my dishes and buying a pint of milk, and it also applies to knitting, using the computer, shopping (yes, even online), watching a TV programme, cooking, seeing friends, chatting on the phone or playing a game.

Some people have the idea that anyone who is off work long-term must be sitting around all day doing the sort of thing they would love to do if only they weren't at work. It's not the case. Not only would I need to be having a good day to attempt half the "day off" things I used to, but as soon as we've factored in stuff like housework, forms for several different benefits, and family commitments, it's an almighty mess.

The best explanation I have ever encountered for this is Spoon Theory. I really recomend you click that link, but if you don't want to, here's the summary:

People with illnesses like mine start each day with a limited number of energy credits, represented by a handful of spoons. Some days it's a good day and you have more spoons than usual (although still not as many as a healthy person might) and some days it's a bad day and you've only got half the spoons you're used to having. Doing things costs you spoons. Resting may make you a spoon or two if you're lucky, but it's not guaranteed. If you spend all your spoons by lunchtime then that's just tough if there's something else you want or need to do later in the day.

Physically do this. Get your handful of spoons (or pens, or knitting needles, or whatever - just one handful though!) and go through your day. Waking up and forcing yourself out of bed? Spoon. Having a bath? Spoon. Washing your hair as well? Another spoon. Getting dressed? Spoon.

Of course, this is what happens to healthy people when they get a bad cold or something. They drag themselves into work wearing an unironed shirt and brushed but not styled hair, get frustrated because they can see that they are performing at a level of less than 100% and are making mistakes, go home, and collapse into bed with a cup of lemsip and some takeaway food. And that's okay, because for a week while you have a cold, you can let things slide - the washing up doesn't HAVE to all be done every day, you can catch up on the laundry when you feel a bit better, your friends will understand that you've had to cancel on a planned get-together, you'll absorb the £5 charge for late payment of a bill in order to not have to worry about getting to the bank this week.

Chronic illness is different. You can't simply skip the vacuuming for three years. Your friends will stop inviting and including you if you never join in, and as a human being you need some social contact. The clean clothes in your wardrobe will all be used up after a few weeks. If you don't get yourself into town, go to the bank and pay your bills, you go past Final Demands and bank charges and into the realms of baliffs at the door. You have to stay on top of everything that needs doing.

So you have to get on, and calculate every activity every day. You have to balance and you have to decide if the fact you have no fresh clothes to wear is more or less important than the fact your cups and dishes have almost invented the wheel. You have to decide whether to read a few pages of a new, interesting book, or to read a familiar book and thus be able to chat to someone on the phone for 15 minutes. You have to be able to tell your friends that you don't have the time or energy to see them, because you've got to use all of that day's spoons on eating three basic meals and filling in a couple more pages on a poxy horrible benefits form.

I can deal with the pain, and I can deal with injuring myself when I fall over, and I can deal with the poor sleep and nausea and fits and all these physical things. But I have real trouble keeping positive while dealing with the constant comparing and choosing and juggling and never being able to forget for even a day about being ill.

And THEN some bugger tells you that you'd feel ever so much better if you just went jogging for an hour each morning... I think that's another post though.