The future – A word that cuts like a knife

The future. Tomorrow, next week, Christmas, next Summer …. these words can be the harshest ones to hear if you live with a medical condition that is destroying your body. You might not make it into this future – and it hurts like hell.  I’m going to share with you how I make this hell a happier place to live – so if you want a totally doom and gloom blog then look away now.  Happy Back to The Future Day. :-)

My different future.

You probably don’t realise it but people are always talking about the future. Maybe it’s planning a day out at the weekend, deciding on what food to buy for the week ahead, a forthcoming birthday, booking next year’s holiday, eagerly waiting for a favourite film to be released in the coming years.

The future can be the next minute, hour, day …. some people with life shortening medical conditions work though life one minute at a time – particularly when you aren’t ‘well’ or in a lot of pain.  Others work to weeks or years – everyone is different.

When you have an impairment, where your friends with the same impairment and age suddenly drop dead – it’s a very different sort of life. My life is characterised by not planning much more than a few days in advance where possible and being prepared to cancel plans on the day if I wake up and feel unwell.

Childhood perceptions of the future.

Parents of children with Muscular Dystrophy worry a lot about ‘the future’- maybe because there is so much emphasis on what a ‘normal’ life should look like e.g. walking upright, achieving at school, becoming an adult, getting married, earning a living etc. Once parents have a disabled child sometimes you can see they immediately grieve for the loss of their child being in their future.  I think this is instantly damaging – yes their child might die as a teenager but like me and many of my friends – they might also live to be 40 or even 50!! Oh yes, they might also graduate with honours, get married, become parents and earn a living …. so here is

 STRATEGY ONE: Don’t believe everything a Dr or medical book says. They can get it very wrong and lead you to fear what might not happen for many many years and restrict what you do in life.

I wrote myself off – back in 1985 I was 3 years and many falls into my diagnosis. People like me died when they were teenagers. I intentionally never played ‘House’ where you pretended to be a mummy in a make believe future, because that wouldn’t be my future. I’d be dead. What was the point. Yes a 10 year old child can think like that. As the years went by, I got nearer my late teens and didn’t feel like I’d be dead soon … actually, apart from not being able to walk very well and mostly using a wheelchair, I didn’t feel near death at all. So, I changed my mind and decided to live like I’d get to 100.

STRATEGY TWO: Death dates are rubbish – I ignore them! Don’t write yourself off too soon. The future is different for everyone.

When I was in my twenties I asked the Dr what age do people die now? He said in their early 30’s.

When I was in my thirties, I asked the Dr what age do people live to now? He said maybe 40.

Last month I was 40. I have lived long enough to be able to wear my grey hair as a badge of honour and a reminder to stick two fingers up to those Dr’s. I survived. I made it into the future they said I would never had. THAT is a good result don’t you think?  Good job I didn’t take their prediction too seriously.

Don’t waste time

Here is another time wasting trap that you can easily fall into – the search for a cure.

STRATEGY THREE: Don’t waste too much time looking for a cure … get on with life with what you have.

Maybe a therapy will be found, maybe not. Don’t spend days scouring the internet for the latest research each week, constantly campaigning for research or trying new drugs. Have a little read then get on with life. I see so many people spending hours and hours every week fundraising for a cure, reading up about research … all the time precious days and hours are wasting away just like your body. I’ve seen someone spends hundreds of pounds each week on a so called ‘miracle diet’.

Snake Oil, targeted at people who fear their future with dystrophy. Diet alone is not going to cure someone – here is my diet tip when time is short.

STRATEGY FOUR: Eat what the hell you like or love and be happy.

Food is a pleasure for me. I love eating curries, chocolate and anything with the word cheese in it. Eating makes me happy. Eating is something I won’t always be able to do because MD eventually stops you being able to swallow.

So to hell with diets. I’m going to eat whatever I want – sensibly. I don’t want to put on weight or clog up my arteries – especially when MD can give you heart problems as well. I don’t want to accelerate my death but I’m certainly not going to hold back on things I love! I will be creating memories when I can no longer swallow and that is my way of dealing with the future.

Awkward conversations

It’s harder to join in with conversations when your future is unsure.

Imagine this one – you are at the hairdressers and they ask the classic “going anywhere nice on your holidays this year?”.  What a conversation killer to say, well actually this time next summer I might be too ill to go on holiday or might even be dead.  Even something as simple as ‘Shall I book the cinema tickets for next week’ can be tricky. The true answer would be I can’t commit to going out because my health may take a nose dive. Of course if you are well, you’ve missed an opportunity to go to the cinema with friends, but on the other hand you haven’t wasted money or your friend’s time.

STRATEGY FIVE : We generally only book hotels, restaurants if they have refundable or zero cancellation fees for example. If I am not well then we can cancel without losing money.

STRATEGY SIX: I do more things alone or just with my husband – because there is less pressure to have to attend events when I am not well. I don’t like messing people around if I suddenly have to cancel – and not everyone understands.

Valuing friends

The majority of my friends have impairments – and most of them have progressive medical conditions. Some could die at any moment. It’s hard to suddenly see your friend’s name on Facebook with RIP next to it. Normally you wouldn’t be bothered if your healthy friends hadn’t been around social media for a while. But with my friends it often means only one thing … that heart stopping moment where you rush to their profile page, preparing for the worse.

I wonder whether the thing I just shared on social media might be the last – and what will that say to people who might visit my memorial page! What lasting impression will I give people … it’s kind of amusing. Read your last tweets/retweets and status updates and see if that is how you want to be remembered. It might make you think.

So maybe we value each other a bit more and the time we have – e-mails and chats are responded to quicker – tomorrow may never come.  We joke more about the future and about being old with our 20 year old friends. Birthdays become very poignant – a celebration of making it to that age and a harsh reminder of how little time might be ahead.

Live life quicker

STRATEGY SEVEN – pack as much into your life whilst you can.

It’s the classic – don’t put off doing something today because you think you can do it tomorrow.

You have to pack into life, the things you want to do or experience, in a much shorter time.  It might be something as simple as having a favourite meal or as big as a trip away to somewhere you’ve always wanted to go. Sometimes things are just not possible and you have to have a ‘next best thing’ strategy. I substitute the ‘go round the world’ adventure for a jaunt on google earth or the immersive experience of interacting with world travellers live on Periscope from the comfort of my own home.

Final thought

So, like Marty in the classic movie we mark today – living without a definite future can be tricky, sometimes we see our image fade before our very eyes. Missing from the albums of future weddings and special occasions. Sometimes it’s amusing and brings up unique conversations.   Most times it’s pretty darn good and not set in stone – but I AM disappointed we haven’t invented the hover chair yet ….. See you in the future ….

Beginner shrimps for new keepers

Beginners may want to start out with these shrimps. With optimum conditions they can live 1 – 2 years.

Good starter shrimp for first time keepers are Cherry (many colours but red is the hardiest in my experience) and Rili (again red has been hardier).

Click on the chart for a larger image.


Other good shrimp are Blue Jelly, Pearl and one of my favourites – the hardy Skunk or Rhino Horn shrimp.

Beginner shrimp 2

Re-mineralising rain/RO water

Shrimp are very picky – they like their water to have the right balance of minerals and trace elements.

If you have a tank that uses rainwater or RO water, then you will have to re-mineralise the water.  I use Salty Shrimp (other brands are available) – every water change I put my TDS pen into my bucket of filtered rainwater and add the salt (with the supplied scoop) a little at a time to the desired level.

What is the desired level.

Each type of Salty Shrimp suggests going to a certain level of conductivity – which you can convert to TDS (see chart below) or a d (degrees hardness level).

You choose the type of salty shrimp according to the label e.g. some are specific to shrimps like Cherry shrimp and others are made for Salawesi shrimp.

I can never remember which ones are suited for which shrimp – so I made a chart!

Problems to figure out the dosage

  1. Most keepers re-mineralise to a TDS level. The first thing to notice is the tub uses a different unit of measurement – the unit for conductance, MicroSiemens.
  2. What I have noticed is that the tub suggests a microsiemen amount e.g. 270 for the one I use (which is around 173 (plus or minus 32) TDS). However it also says you can go to 6 degrees Hardness (dH) which is a TDS of 107.4
  3.  Also consider that some shrimp keepers will just go to what they think is a good amount of TDS for their shrimp recommended from a shop or forum – e.g.220-240 is what I’ve heard several times and is what I chose.
  4. Lastly I have two types of shrimp in my tank (Tigers and Red Cherry variants). There are different powders for each of these!  Cherry are supposed to settle in a range of TDS but Tigers prefer softer water and much lower TDS. That said, my Tigers have done well in a high TDS.



Good Riddance to the ILF

Well, here we are at the end of the ILF era. It’s a key date, destined to be part of UK disability history.

Reading the news, watching lobbying in Parliament and perusing  social network comments, you would think everyone using the fund wanted it back. Nowhere was there a balance of hearing from people like me. Long term fund users who were glad to see it end.

Disabled friends vilified me. How dare I be glad this is happening.  It would mean imprisonment, having no care and feeling you’d be better off dead.

I am going to celebrate a new beginning.

The good…

Actually, my needs had not changed and the local authority did the assessment. They agreed to fund me the part ILF covered. I had no drop in the amount and I’m financially better off as I won’t have to contribute towards my care. So, at least for now, things are good.

The bad…

The ILF had many problems for me. No longer do I have to do exhausting 3-4 hr reviews -being questioned by the ILF to enable funding for another year.

No more tears having to tell them over and over how impaired I am – repeating the same thing as Adult Services already knew. No more appeals and lengthy complaints procedures when they would cut my funding giving no explanation.

No more rules like “we give extra funding for out of pocket carer/PA expenses… but only if you ask” and “you are not allowed to use your ILF funded hours for doing window cleaning, gardening …. “.  They even stopped disabled parents using their funds for Personal Assistance to enable them to care for their children.

Since 1997 I’d been trying to get them to communicate by e-mail because it was the easiest method for me that meant I could read  information privately and easily and access it without physical assistance. That never happened. They continued phoning and  posting printed information. They never understood my needs.

No more arguments between Adult Services and the ILF about exactly who would fund which hour. Would Adult Services fund the first toilet visit on a Tuesday or the ILF? That is how petty it would be. The ILF kept a chart of each hour on each day to see which ones they would fund.  In the end this was nonsense because they both put the money in my account and I just got on with paying my assistants.

No more having to contribute 50% of my government benefit for care. I can now use that towards care and disability related expenses that fall outside of council funding.

The ILF was hardly run in the spirit of transparency and Independent Living.  In fact, it was so bad the Trust had to rewrite its constitution some years ago.

Using the fund was a necessary evil. It got me through university when Direct Payments didn’t exist.  It topped up my high care package that kept me living in my own home and employing PAs.  They reluctantly funded some hours to top up a third funding stream, Access to Work. What a hellish process of persuasion that was.

and the ugly?

I don’t disagree that the switch over to council funding has been badly organised in England.  People are having a very stressful time. I have too.

The local authority should have been made to ring fence the extra funding provided to them for ex ILF users.   The amount was only a one off and it seems wasn’t enough to fund people in those local authority areas, causing ‘your funding may decrease’ letters going out.   Also, councils left it until the last minute further adding to the stress. Finally, Social Care law changed in April so practitioners are still getting to grips with new procedures and guidelines which elongates the process.

Where I’m at today

My switch over was exhausting (made me I’ll for 4 days) but positive.  It was done in an understanding manner and I was informed what stage it was at along the way.  It was just a repeat of everything that should have been on file and some hoop jumping.

I am currently applying for Continuing Health Care and a Personal Health Budget.  It’s going badly. It’s a hundred times more stressful and exhausting than the ILF switch because of making me feel dehumanised.  I guess that story will become another blog post!

Update November 2015

I wrote an article for Disability and Society called ‘In celebration of the closure of the ILF‘. which was published in October.

It’s free to download.

I had the second part of my assessment to try and get a Personal Health Budget. As I wrote above, the first session went badly. The second one not so bad – but still exhausting and stressful. Basically they agreed to fund me and I switched over from Direct Payments within 6 weeks. I have extra funding for support to give hubs a break and some other things – so far it is going ok.