Friday, November 20, 2015

What is the point?

I wrote this nearly a week ago, but feel so ashamed it has taken until now to pluck up the courage to share it and I still don't know if I am doing the right thing.

1am 14th November

Can't sleep again, so upset and overwhelmed with life and possessions.  I am so ashamed and upset at all the craft stuff I have most of which will never be used as I don't have the ability, time or energy to use it.  Today I wore myself out looking for something, there are so many places to check and so much stuff to go through, things are still not back to normal after building work so makes finding things all the harder.  So many unused things, so many UFO (unfinished objects), it's madness.  I dread to think of the cost of it and the cost of things to store it in too.

We are always saying we can't afford the things we would like and we would get pleasure out of, yet we have boxes and cupboards full of stuff that costs money.  Not just craft stuff; books, toys, kitchen stuff, tools and gadgets and clothes, and once bought it is all worthless.  My husband tell me they are sunk costs.

"In economics and business decision-making, a sunk cost is a cost that has already been incurred and cannot be recovered. Sunk costs are sometimes contrasted with prospective costs, which are future costs that may be incurred or changed if an action is taken." Wikipedia

How did we get it all?  It's scary and gives no pleasure at all, just stress and guilt.

What makes me think that any purchase will get used any more than the previous ones?

What right do I have to send money I don't earn?

When I spend so stupidly how can I say we can't afford things we need or help we need when I have hoarded so many things, it's so wrong.

Even if I started now I could never use up all the stuff and of course trends and interests change so much of it becomes obsolete unless you are very creative, which I am not.

My husband earns all the money for me to squander it on useless stuff including clothes and shoes etc which mostly go untouched as I rarely wear anything special as I am alone in the house most of the time only get out for the school run.

He also funds my disability needs as I have no income.  I had an assessment the other day for my social care funding and my income is a grand total of £21.80 per week.  I get no benefits because of inconsistent NI contributions and because my husband works.  The cost of illness and disability is quite high; wheelchair, scooter, prescriptions, glasses, hearing aids, walking stick.  I am a huge liability and give nothing in return.  

It's doubtful that even these purchases are worth it, my wheelchair is probably the exception, but it's in a poor state.  I am still reliant on others even if I use my wheelchair as it is attendant propelled and I couldn't manage on my own. I don't like using the wheelchair, but it means I do get out of the house. When you are in the wheelchair you do become invisible and people don't talk to you in person and they have little consideration and you are just at the level of everyone's, bums, elbows, bags and cigarettes too! I have a walking stick, but find it a pain to use. I have a mobility scooter, but rarely use it as I cannot get it in and out of the car so can only use it from home and the weather is rarely good enough to use it, can't be used in the rain and I feel cold very easily and it does require concentration to use it where as in a wheelchair someone else controls it. My daughter has been teased at school because of my wheelchair and walking stick. My daughter hates the wheelchair as it means she has to be independent when we are out and feels she is being ignored as my husband is pushing me, she is not quite big enough to push me herself which she doesn't mind doing and she is too big to sit on my knee which she could do when she was younger and made busy places easier to cope with.  I have been having a discussion this week about getting a stick with a seat for doing school, but It's only for doing school to go from car park to classroom the rest of the time I use my wheelchair so can't really justify another piece of equipment and daren't give anyone more reason to pick on Emily.   I find my normal stick a nuisance as it is so assume seat stick would be more so and in the busy playground I am likely to end up on the floor whilst trying to balance on the seat.  It has only become an issue now it is too cold and wet to sit on the floor!

Hearing aids do help, but also cause a lot of stress, I am currently without one as it needed to be repaired and the cost of purchase and maintenance costs is unbelievable, but it became too difficult to get NHS ones and to travel to appointments and to collect batteries etc.

Prescriptions are probably not that worth it either, but it's the only treatment on offer and at best they mask symptoms, but often are of no benefit and take a lot of time and effort to obtain.

Glasses are a new thing to me, so no idea if they will be much use, I am sure most of the time I will have no idea where they are.  I chose the cheapest pair in the shop, but was then charged more than the glasses to have an anti glare coating on them due to my intolerance to bright light!  organisations sure know how to make money out of peoples needs.

Once upon a time we used to eat out and have nice holidays, but not now.  Even though Rob earns more they seem unaffordable or an expense we can't justify.  We thought things may improve a bit as Rob has got a promotion, but guess what?  He won't get more money, just more work and more responsibility!  It's a job he really wants to do so is taking it, it can't be all about money all the time, but it seems very unfair.

I am so stupid and not setting a good example for Emily about how to manage money or about finishing projects and managing time.  Last night she was watching Grand Designs and said she would like the house.  I said we can't afford it, she asked how much it would be.  I told her it would be several Million and she said well just go to the bank and get it, she couldn't understand that we don't have several Million in the bank, but then those programmes don't help as people borrow much more than they can afford.

I never stick at anything. I forget so many things I have learned or lose the ability to do things.  I never have enough time or energy as it all goes on daily routine or searching for things.  I feel so stupid and useless and hate living this way.  It feels like my whole life has been a string of failures, inability to succeed, not finishing things or trying things I am not capable of.

I hate feeling this way, I am 44 and haven't achieved anything and never will.  There is no point in looking for other things to try, I have more than enough to keep me going, but just don't/can't do it.  I'll never achieve anything or move on or feel pride in things I do.  You only have one shot at life and I have really messed up and don't know how to change that.

I am unemployable, of little help to anyone and not very skilled at most things.  I know I am lucky to be able to afford some things and to have my house and family, but it's not the life I want for me or my family we are all pretty miserable most of the time.

I must look and sound like a spoilt brat, I don't deserve any of these things and I am not grateful for them as it makes me so unhappy and angry.  I am so disillusioned with everything I try as it is never good enough or I need some sort of help or just find it too hard and it all becomes pointless.

What is the point in making things no one needs or is interested in?

What is the point of writing a blog that no one is interested in anyway, especially all my self pity?

What is the point of trying to make people aware of ME?  What does it matter to those who don't have it?  Why should it be taken more seriously or researched better it's of no interest or benefit to other people and those who don't have it don't need to know about it.

What is the point of writing stories I can't do anything with so they just join the rest of the things that will never be finished off properly or be of any use to any one?

What is the point of getting up each day to follow the same routine and to push beyond my limits and then be of no use to anyone and by the time I see anyone else all I want is my bed?

What is the point of being in bed if I can't sleep or rest properly so I am tired and ad tempered before the next day begins?

What is the point of trying when all I seem to do is make a mess of things or wear myself out even when my intentions are good?

What is the point of having a family if I am useless and a burden to them and unable to join in so many things.

What is the point of reading a book when you have no idea what you have read or buying a magazine only to flick through it and wish you could do all the crafts recipes etc?

What is the point of finding recipes that we never have the to make or don't have the ingredients for?

What is the point of trying to have nice meals or healthier food when much of it gets wasted?

What is the point in complaining when no one wants to hear or has any interest?

What is the point in soldiering on when it just makes things more difficult and is not appreciated?

What should I do?

What can I do?

Why does everything feel so wrong?

What is the point of me trying to sleep when it won't make any difference to how I feel in the morning?

What is the point in being awake and worrying about everything?

It's pointless, stupid, waste of time and energy.

What is the point in spending an hour writing all this rubbish?
frown emotico


  1. Thanks for sharing that Jane. I appreciate someone putting onto paper many of the things that I feel about possessions and M.E and crafting. I don't know about you but I always feel slightly better to have got the thoughts in my head out.Small consolation I know!
    What a frustrating and disappointing disease this is. I often think I have great ideas (like you...for my crafting) but finding the motivation to push past the pain and exhaustion is mostly too much for me.
    I'm lying on the bed needing a shower and trying to muster up the oomph to go do it.......I know once I do that will be my energy for the day.
    I'm very glad I came across your has reassured me that I am not alone with my frustrations and sadness. Thank you Jane xx.

  2. Hugs my dear - we all feel like this sometimes - you are not useless, and everyone is entitled to moan, we raise awareness so that one day people like us will get the help and benefits we deserve rather than a down trodden life. We craft as a kind of meditation. A way to try to feel better in our heads. We carry on regardless because we should and we do. Your family loves you illness or no illness, kids will bully for any reason (maybe pop into school and offer to do a 5 min talk with the children about disability - certainly worth talking to the school about bullying and their discrimination policy) CHin up - you can message me when ever. And by the way I thought you were WAAAAYYY younger.

  3. Oh it hurt so much to read this. But no way near as much as it had to have hurt you to write it. Still, when I journal, even if it's only privately, I feel so much better getting the poison out of my head and onto the paper, computer, post it note, WHATEVER.

    You sound overwhelmed. May I share some things that have worked for me? If not, just skip the rest of this and know you're in my prayers. If yes, read on.

    I've had to move twice in the past 18 months. The first move was leaving a house of 4,000 square feet (after 14 years of filling it up) for one of 1,000. It made me really look at what I needed versus what I had. So much "I'll need this one day". So many crafts bought with good intentions that never happened. So many clothes, shoes that are too big or too small, not to mention out-of-fashion that I will never, ever wear again. So many trinkets to commemorate this and that, half of which no longer bring to mind the things they are supposed to make me remember!

    Gone now. All gone. Without the space to hold them all I was suddenly freed. At first I felt guilty. These are perfectly useful things I told myself. But we're they useful to the point of spending $70 a month for a storage locker? No. The clothes and shoes went to the thrift shop. I've even seen them worn around my small town and smiled to know someone else liked them and is getting use of them.

    The craft projects were donated to the local disabled organisation and I see the completed projects for sale at their fundraisers.

    The mementos? If I couldn't recall what they were supposed to remind me of, and none of my friends or family could either, what good are they doing me? Donated to schools for carnival prizes and fundraisers.

    All this stuff gone. I'm out from under the guilt burden of them.

    Best of luck to you. Julie.

  4. You are a truly amazing person who inspires many of us that struggle with similar problems.You have achieved a lot,most of all bringing your lovely daughter in to the world and raising her with your husband.You are clever,kind and caring.I can understand your frustration at not being able to do the things you want as everyday life takes up so much energy,I feel the same.Have a look at this quote I found.Sending you hugs and positive thoughts xx

  5. Thank you for the kind comments and support, I am overwhelmed by the support I have got following this post.

    Rachael the quote is a good one thanks.

  6. I appreciate you putting into words what many of us feel. We still think the same way as we did before M.E took hold and buy stuff without even stopping to think that we will be unable to use it all. I desperately want to craft, read, sew, paint etc but after doing the basics like washing, dressing, eating, I do not have the energy or inspiration for anything else. I live in hope that one day my body will let me enjoy life again. Once again, thank you for your well written words, Jane.
    Lots of love, Julie xxx