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What Can I Do?
What can you do was a question asked on a facebook page the other day. I answered ” I am limited due to health problems and get so hung up on what I can’t do. It’s much better to focus on what I can do and be proud of what I acheieve, but I don’t think many of us are very good at that.”
I am rubbish at taking my own advice and always try to do things that I can’t or to push my limits because I hate the limits. I always focus on the thing I couldn’t get done or had to ask someone else to do, rather than the things I did (no matter how small) that I did manage to do. It’s so easy to dismiss something like reading a book as doing nothing, or putting a load of washing in as as an essential chore and therefore not really counting as doing anything. With ME any task is something and drains our resources. If I do something one day that pushes my limits then I can’t sleep, am in a lot of pain and can’t do anything the next day, it becomes a viscious circle and there are never any reserves for unexpected things.
With ME rest is crucial, but what if you can’t rest? This may sound crazy, but the more I have done, the less able I am to rest and or sleep and just feel awful and never know what to do for the best. There is only so long that you can lay trying to rest or sleep with heart pounding and brain racing. I am currently having problems with bladder spasms when I try to rest, so frequent trips to the toilet don’t help with rest. I am sure it is due to adrenaline, there is no sign of infection. I have a blood test to check it out tomorrow and then in the evening we have Emily’s primary school leaving party, so I have already done too much tomorrow before it has even happened!
How do you work out what you can do, what you want to do, what you need to do and what you should do?
It’s difficult to know what I can do each day and can vary hour by hour, so of course it’s impossible for anyone else to know. Or I might fancy doing something sand then find that I physically can’t or that I can’t forcus on it, by then of course I have done too much and it’s too late!
I like making things a you know, but often by the time I pick something up to do I am already worn out just from the daily activities I have done or I will wear myself out looking for something that I need. I can’t concentrate to do things when other people are around so the time I have is limited. Then take into account the mistakes I make and have to correct it becomes frustrating and tiring. My head is full of ideas, but many of them never make it any further!
I think I need to finish now I have done all I can!
P.S
This just landed in my inbox from The Mighty a site for people with disabilities and health problems.
“It’s easier to count up the things you can’t do than the things you can do, isn’t it? But here’s a more important truth: Your illness has also given you some pretty awesome qualities. Who else but a chronic warrior can amuse themselves in waiting rooms for hours? Or truly empathize with another person’s pain? Or give themselves injections and other medical treatments that might make others squeamish, without batting an eye? There may be some things you’re not quite as “good at” anymore, but there are some things you do better than many others around you, thanks to your chronic illness. We asked our Mighty community to share something people with chronic illnesses are awesome at because of their illness. The responses they shared are both funny and heartwarming, and speak to the strength of every single person who lives with chronic illness. You all rock.”
One More Step Along The World We Go
Well I survived my birthday, got some lovely presents and visited Kitty Cafe Leeds for tea and cake 🙂 There is an amazing selection of teas and lots of cute cats so that’s me sorted
We have been back again twice!! It’s not cheap as you have to pay per person per visit plus anything you eat or drink, but it’s relaxing and fun and keeps Emily occupied too and she was most put out when we went once without her!! I get on better with cats than people! I had to laugh at myself yesterday waiting for Emily to finish her sewing class a cat wandered past, I said “oh hello”, if it had been a person I wouldn’t have said anything!!!
A lot has happened in the 3 weeks since my birthday as emily was finishing Primary school and moving to High school, it’s been very hectic with so many leaving and new comers events. In our area of Leeds the children move to their new year in July and do a week or two transistion before the summer holiday. Its a great idea and saves a lot of worry during the summer holidays for kids and parents. Monday was Emily’s first day. We had to take her for 8.20 and then leave, she came home on the bus. I think she was most nervous about the bus, but coped well and was really excited when she came home and said she wanted to go back! It was great to see her so happy and able to put the worries of the move behind her. She had got to know a few people as there aren’t many children from her primary school, but she couldn’t remember the name of her form teacher!!
It’s the start of a new era for me too having finished with 7 years of school runs. I have to be up earlier in the morning to make sure Emily is off to school. School finishes earlier so I am on my own about the same amount of time, but don’t have to drive as she catches bus to and from school. It’s a change to my routine and has muddled me up so I am not resting well and feel pretty rubbish, but it’s also been a busy few weeks so will be nice when things settle down. Emily has several events so it will be after the holidays before I get into a new routine I think.
I don’t know what I will do with myself, I still have to be up and about in case a problem with buses. Emily is having to give up the only after school class I take her to as it clashes with school commitments. It will be a relief, but also sad. It was difficult for me to get her to class and then wait for her and drive home again. Sometimes Rob caught bus from work to meet us and drive home, but often the bus was missing so he had to go home instead. Unless the school buses are messed up or Emily has an after school event I won’t have any reason to go out, but I am sure things won’t be a quiet as I imagine, life usually keeps me on my toes. It is sad when the only time I go anywhere is to take Emily somewhere. I can’t take myself somewhere as I can’t drive there do something and drive back and I can’t walk so can only go places where I can park outside. I can’t drive more than a few miles, so it’s very limiting. The only times I get out are if we all go somewhere, but that’s usually only running errands at weekends and going to visit family.
I have lots of ideas for things I want to make, but I get very disillusioned as I have no way of selling them or any interest. I can’t make large amounts. I had a bit of stock which I sent to Emily’s school for their summer fair, but i was upset to see they were selling my cards and pictures for 50p and £1 on the Bric a Brac stall! They asked for seaside theme stuff for raffle and stall so I made a couple of pictues especially
I have no idea if they sold, I was hoping to get them back!
I have lots of things I want to do and things to finish, but I know in reality much of it will stay in my head and I will only make stuff for my own needs.
I have some other things to post about but will end this one before it becomes a long ramble.
Question Time- Question 2
Question 2
“How do you stop people from upsetting you or annoying you. Emily has a book about temper and it says quite rightly you can’t change what other people do, but you can change how you react to what they do. I am really sick of being upset and angry with people, it’s a waste of my time and energy, the people won’t change so how do I change my reaction?”
I take peoples comments and behaviours personally and always think that people are being critical of me, or that their behaviour is directed at me and I am to blame for it or that they are trying to punish me for being ill and that I am an inferior person.
I get fed up with with Facebook and the like portraying such a blissful image of life and people doing all the things I can’t.
I want to be more Mindful and live in the here and now and appreciate what is around me, rather than being so stressed out and missing out of life.
But what does this actually mean? Dictionary.com defines serenity as “the state or quality of being serene, calm, or tranquil; sereneness.” So basically keeping calm and not letting things that cannot be changed get to you and accepting that even though you might not like it, that’s how things are. In the case of ME accepting that I have an illness and have limitations and that there is nothing I can do to change that so there isn’t much point it letting it upset or trying to fight against it and therefore I will feel happier and calmer and get more pleasure from what I am able to do.
Dictionary.com defines courage as “the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.” The first thing that springs to mind here is the lion in Wizard of Oz, who wanted to be braver. A search of Wikipedia says of the lion “the Cowardly Lion believes that his fear makes him inadequate. He does not understand that courage means acting in the face of fear, which he does frequently. ” Yes I can relate to that which brings to mind another quote from my favourite bear;
According to Dictionary.com Wisdom is “the quality or state of being wise; knowledge of what is true or right coupled with just judgement as to action; sagacity, discernment, or insight.” Google says it is “the fact of being based on sensible or wise thinking.” Apparently I am not wise as I do not have my wisdom teeth! Well I had one removed and I have one painfully trying to sprout. We do always seem to think that it is older people who are wise because of what they have lived through and experienced. From an ME point of view it is wise to accept the illness and keep to our limitations, and look after ourselves, but it doesn’t feel wise it feels like giving in.
I am going to put on my serene, courageous, wise head on now and go to get some rest.
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Brilliant view
I have to share this view of ME that I read the other day, I am sure all sufferers will relate to it and the coping strategies are very clever. Sister’s cafe article. The blog looks like a good one to follow has many different topics, one about homework that I will be checking out too, like the author I also hates my daughters homework.
I am going to need a lot of coping strategies today, countdown to party has begun and I feel like I want to go back to bed, wish me luck!
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Party Time, arrrggghh
I have just read an article by another ME sufferer who says they enjoy celebrations, I am afraid they fill me with dread and I find them really hard work, but do my best and accept the consequences.
I can’t believe that my baby will be 9 tomorrow we have gone from this
to this in what seems a very short time.
In other ways it has been a very long a difficult 9 years, with many ups and downs. I think the most scary thought is that in another 9 years she will be 18.
Having ME makes me feel I have missed out on so much of Emily growing up and I often get my priorities wrong, putting my energies into making sure she can do what she wants to do and not be denied experiences because of my ME. I think I try too hard sometimes and go over the top to compensate for my limitations and use my energy getting things organised rather than just cherishing time with her.
I was determined not to organise a party this year, but as ever I gave in as Emily wanted a party. It will be the first party we have had at home and I have had to round up a few helpers as I can’t stand the thought of it all in my house and having the noise and mess all around, but hiring a venue and sorting an activity becomes far too expensive. Last year Emily had a new bedroom built so we are combining a sort of bedroom warming and birthday party and having a photo shoot party with WhiteBox Photography. The picture above was taken by them and we love their photos, so hoping it will be a great day.
ME wise I know it will be hard and that I will feel awful afterwards, I already do and there are 2 days to go until the party. her actual birthday being tomorrow she will be at school and then is going to her usual Friday activity at the local church and taking a birthday cake of course.
I thought I was really organised this year starting making her card just after Christmas and I did get it done in good time, but then had a rush on to get Rob’s finished too (his birthday Monday). having tp spend 2 days in bed this week didn’t help much! I have printed out a big yellow no.9 and a big duck. The party has a bit of a duck theme. It took me a while to sort out a cake, as my usual cake making person can’t do this year, but thankfully another one stepped in, I didn’t fancy a shop one after some of the great ones we have had in previous years. I am really excited to see the cakes. The cakes will be the star of the photo shoot along with the big yellow duck that Emily has had in every photo from WhiteBox.
I also thought I was organised with presents, but then got to yesterday and they still weren’t wrapped up. My wrapping up leaves something to be desired at the best of times, so many of the presents are just in gift bags, well she won’t have a lot of time to open them so I have made it easier for her 😉 Her main present is a hamster, which I haven’t bought yet and don’t have to wrap, but have to find the time and energy to take her to buy and find somewhere in the house for it’s cage to go. She is going to be quite disappointed that she doesn’t have a hamster when she gets up in the morning, but I am not quite sure how she expected me to buy and hide one!! last week I took her and her friend in the local pet shop to look at hamsters, there was one we liked, but then it bit her friend so we went off that one.
Rob is having tomorrow off work so we can get things organised and get decorations put up and finish the last bits of shopping. It’s poor timing as he started a new job this week, but even worse timing was me being too ill to do school runs on Tuesday and him having to work a shorter day. Even though it is a new job it’s in the same place and the people know him, so I hope it doesn’t count against him too much! I know he does work at home after I have gone to bed sometimes, which makes me feel really bad. I also have a list of other things for him to do whilst he is not at work, no rest for the poor man.
Will post an update when I am up to it after the party.
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Merry Christmas everyone
Well only a few days to go before the big day, we seem to have been in the run up for months. I am not sure how I am keeping going as there seems to be one problem after another on top of Christmas preparations and school holidays and normal routine. I am not sleeping despite being exhausted as my body is flooded with adrenaline and cannot relax.
So many people seem to be struggling and finding it difficult to get into the Christmas spirit, whilst the kids are hyper and singing Christmas songs dawn till dusk!
The weather is weird, not very festive at all, but some newspapers are still saying we will have a white Christmas!
It is difficult to know what to do at this time of year it is so exhausting and the demands are huge and there is so much conflict about what to do, what you can manage, what you should miss out on and then there are always unexpected things that crop up, in my case; toothache, a very sick cat, things falling down or falling apart, Emily wanting to do cooking, crafting etc.
I never know what I should try to do and what is not worth the effort and probably spend far too much energy on this debate. I don’t want to miss out on seeing people and seeing Emily enjoy Christmas, but I know I will feel awful. The alternative is to be stuck on my own still feeling awful and wondering what I am missing. To be honest most people won’t really notice if you are there or not as long as you don’t miss a major event like Christmas dinner. I usually end up doing a mixture of being there and not being there and still always do too much. Other people carry on with whatever they are doing with or without you.
The lists symptoms starts to feel a bit like 12 days of Christmas;
On the first day of Christmas my ME gave to me Chronic Exhaustion,
On the second day of Christmas my ME gave to me, aches and pains and chronic exhaustion
On the third day of Christmas my ME gave to me brainfog, aches and pains and chronic exhaustion
On the fourth day of Christmas my ME gave to me dizziness, brainfog, aches and pains and chronic exhaustion
and so on until you get to the 12th day where you feel like you got trampled by 12 reindeer and never want to see Christmas ever again!
Also at this time of year I start thinking about what I want to achieve next year and how it will be better than this year, more pressure, more things to do and in the end I am disappointed as I never fulfil what I wanted to, I miss out on things, I push myself way beyond my limits, I send all the time feeling awful and another year passes and not much changes except we are all another year older, I’d like to say wiser, but don’t think that is the case.
Well I had better finish now and wish everyone a Merry Christmas whatever you choose to do and hope that 2016 is a better year for everyone and remember
Hang in there!
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Thank you ME
Before I begin I want to say sorry to the many of you for which this would have been impossible and I hope I haven’t caused any upset, I know I often get upset when I read about what others are able to do and know that I couldn’t even consider doing.
This is unusual for me, but I want to say thank you to my ME for allowing me to survive last week when we risked a 5 day trip to London. It was an organised trip and amazing value and meant we could visit places that we would never manage on our own. Also being a coach trip meant that Rob didn’t have to drive so theoretically it was better for him. Unfortunately due to his own health issues he did get ill on the first night and and struggled for a couple of days, but we avoided a medical emergency this time. What a pair we are.
Any trip for us takes a lot of planning and wondering how we will manage, so we tend to stay close to home or places where we can easily get help. We knew this trip would be hectic and I wasn’t sure if I would manage all the days out. I had planned to miss one of them, but due to uncertainty about Rob I ended up going. If I had stayed at hotel I would have been stuck in the room as it was to far to even walk to reception or get outside.
I still don’t know how I got through the trip especially with the added stress and consequences of Rob being ill. In part I got by on adrenaline, sleeping tablets, extra food, pain killers and sheer bloody mindedness. Taking the sleeping tablets meant that I was settled at night, since I got back I haven’t slept due to the adrenaline still raging and the day to day worries being back. For short periods the adrenaline gets me by and enables me to do things not normally possible, but then it becomes a nuisance and is no longer helpful, so it’s best to avoid if possible as the effects are detrimental. Normally anyone one of the days would have really wiped me out as they were busy and overwhelming. At the same time though I wasn’t trying to do my daily routine as well, no meals to think about, no stairs to climb, no walking around the house, used wheelchair all the time even in hotel. there were no loads of washing to put in or things to tidy up or making sure we didn’t run out of milk or cat food (no cat to feed either!) Travelling by coach, although it was noisy and I had to entertain Emily, was less stressful as you are above the traffic and not so aware of the speed and other vehicles or watching where you are going. All the kids on the coach were well behaved, the only thing that got me was the one one-upmanship of who could spend the most or who had the best job. Using a wheelchair of course makes you stand out and be looked down on, but thankfully the driver was helpful with getting wheelchair on and off it also gets you a few short cuts in some places like the London Eye, but not at Chessington who want you to prove that you need to be in a wheelchair (not sure how you do this and we weren’t told about it until we tried to get on the safari ride and were told to go away).
Although I was there I still felt like I missed out and couldn’t do things like everyone else or play with my daughter or hold her hand. The first day was hard as she hates me being in the wheelchair and really protests that she can’t walk etc or things are too hard. I also realised that I didn’t notice a lot of stuff around me, just focussed on one little bit at a time rather than the bigger picture, it would have been too overwhelming otherwise. With Rob being unwell too we didn’t push ourselves as much as we might have done and kept stopping for drinks and a sit down (for them) and he slept on the coach most of the time. In some places it felt like we spent a lot of time finding our way to things and then not appreciating them when we got there and moving on to the next thing. Kids are also impatient and always want to be doing something, or sitting down saying they can’t walk another step only minutes later to be running round a playground or something.
On the final day we met up with a friend who also has ME and her family. We haven’t seen them for 9 years, I was pregnant with Emily last time so they had never met her. My friend was using the meet up to use a wheelchair for the first time and she soon discovered that although it does save energy it’s not the easy option, it is uncomfortable, you can’t see things and you still feel rubbish at the end of the day, but it means you can be present and her kids enjoyed the novelty. I get sick of it, but know I need it and I literally can’t walk far anyway and despite more than 10 years using it I still don’t like it, but I guess I am not meant to like it. Emily hates it too and yet she has never known any different. I am small, but hate being at a level with everyone’s bums, elbows and bags and seemingly invisible too, you also get al the bags, coats, drinks, shopping, camera’s etc piled on top of you, so you can’t stand up even if you want to. I hate not having any say in where I go or what I see and not being able to talk to the person pushing me, it gets very frustrating. The advantages being sometimes able to jump queues, not having to queue for the toilet (sometimes) and many places it’s free parking for blue badge holders (not relevant of this trip) and I won’t bore you with my rant about benefits changes and losing blue badge and motability entitlements.
I still don’t quite know how we survived and I have felt ill since I got back, but whilst away I felt numb really, not ill, not well, just nothing, kind of unaware of my body really, quite strange. I did feel ill at the end of each day and in pain and tired and was in bed early with my sleeping tablets. On the way home I really struggled with pain and by the time we got back my hands and feet were literally numb and I didn’t know what to do with myself. I collapsed in bed, but didn’t get any sleep and still haven’t slept properly. I will never, never understand this stupid illness the more worn out I am the less I can sleep, it’s torture. After a few days away from home and doing different things which was extremely tiring, I am now back at home and back to using my energy for day to day routine and unable to do fun things or get out, whilst everyone else can do what they want and go off without me, post holiday blues and payback and motion sickness from travelling. Emily gets to do nice things with other people but not with me.
Whilst we were away Emily was watching TV and an advert for Senokot came on. She said to me , you should get some of those Mummy. I asked her why she thought that, her reply “well it says if you take one at night you will be normal by morning, they could really help you” Bless if only it was that simple!
I will finish with a few pictures and a firm resolution not to do this again in a hurry!
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Dear December
Please don’t take this the wrong way, but I don’t like you. Once you roll in all hell breaks lose in the mad race to Christmas. One day of the year creates so much stress and chaos.
I have been madly trying to shop since September in order to avoid the last minute rush, I have done pretty well, but still have cards to write and presents to wrap and then a big guy in a red suit takes all the credit, whilst I dose myself up on painkillers and put a smile on my face. Next year the big guy can do his own shopping. Typical man letting someone else do all the work then taking the credit! As my daughter keep telling me, no one sees the real Santa, I reckon he doesn’t even do all this flying round the world stuff, probably gets his wife to do it! But we can’t take the risk can we?!
To be fair all the months from September as geared up to Christmas, I am glad I don’t go in shops the tacky music and mountains of gifts would do my head in. I am sick of TV adverts for kids toys and perfume, both of which seem very overpriced.
December you become a mad rush of how many parties you can fit in and how many pantos and carol services you can attend, or in my case I get everyone else ready for the parties and fun whilst I stay at home feeling like Scrooge.
Please tell me how did we get from Christ’s birthday on December 25th a nice peaceful celebration to all this manic present buying, parties, and total madness? I am sure that Christ would not be impressed and he doesn’t get to go to the parties either!
What happened to the advent calenders with little pictures in that counted down to Christmas day, now they have to contain chocolate or gifts or money, so that’s 24 gifts before Christmas day even arrives.
Going back to the big guy in the red suit, where did he come from? Many kids don’t even like him. My daughter is terrified at the thought of him being in the house and gets very anxious on Christmas eve and won’t sleep in her own bed! She makes us promise he won’t go in the room. Today she asked me how come he doesn’t set the burglar alarm off when he comes in. I said perhaps he knows the code, but she thinks its something to do with super powers, ok who am I to argue!
So this week we have already had a Christingle service which was very nice and much more traditional with songs and candles in church. Next comes the school fair a manic event where we all go and buy back the stuff we donated! Don’t get me wrong I what to support the school and there is not much other way of doing it, but it seems a bit like a bring and buy sale! Of course we do it for the kids and there is a lot of work put in by the organisers and kids.
Some people have got decorations up already and Christmas seems to get longer every year. I can’t cope with a tree planted in the corner and flashing lights, having to move the furniture around and untangling everything that was put away neat and tidy at the end of last Christmas! Sorry decorations won’t be up here for another 2 weeks.
Don’t even start me on present buying the kids want everything under the sun and expect it even though they are not good as they promise to be so Santa comes. They get so much stuff that they put it away and never get it out again. Knowing what to buy for people is a nightmare and you always worry that you got it wrong or that its not good enough or not worth enough or compared to what they got from someone else. You save all the receipts (whoops think I forgot this bit!) as somebody will want to change something. You have to be grateful for the presents that you get and then hide many of them in the back of the cupboard because you don’t want to admit you don’t like it. Thinking the spirit of giving and receiving is getting a bit missed and why are we giving and receiving presents when its someone else’s birthday?! I mean wouldn’t you be a bit fed up if it were your birthday and you didn’t get any presents but had to give them to others instead! I can relate to this though as my birthday is also my wedding anniversary and I have to give presents to my husband, we never thought of that when choosing our wedding date!
I would quite happily skip you December and go straight to January, I think animals that hibernate have the right idea, but how do you hibernate with insomnia?
We all like the idea of a traditional Christmas with carols round the open fire and snow on the ground. Not quite the same in front of an electric fire, even one with pretend flames and no chimney for the big guy in the red suit who now had other means of access, make sure you know what your kids think they are before you put your foot in it! Always portrayed on Christmas cards and soppy Christmas films. You never see a Christmas cards with the kids having tantrums, murky grey weather and pots piled high.
Don’t get me wrong there are some nice events, but just too many of them, I mean how many Christmas fairs can you go to, how many Santa’s can you see. Carol services are nice, but how do you fit them in. Parties, sorry over rated, but maybe that’s just because I don’t get to go to any bah humbug. The kids come back hyper on sweets and treats, the hubby comes back drunk and skint!
We start to panic in November about who you will spend Christmas day with, no one says what they really want and someone will be disappointed and everyone ends up agreeing to the things they don’t want to do and spend the day worrying about the people you are not with and hoping they won’t give you too much of a rough time when you do see them.
Well if I think you are bad, I guess I have to be glad I am not a turkey or a tree, December really is not a good month for them!
You are of course the end of the year too, we realise all the things that we haven’t managed this year or how we haven’t changed a bit since last year. We are all another year older and many people have left us, all these emotions conflict with the its December, Christmas you should be having fun, be happy.
Well I guess you are around for the next 30 days, so I had best make the most of it and try to be friends with you, but do forgive me if I get a bit fed up with you and call you names at times. Please don’t be upset when I say I will be glad to see the back of you, but then we get January, think I might be writing to him as well as he is not my best friend either, hope that makes you feel a bit better!
Happy December!
I leave you with one of those pictures used make us think nice thoughts and cons us into December madness every year.
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What can I do?
I am so fed up of everything I do having consequences and affecting me so much. I know I am always doing too much and doing things that are not good for me, but if I cut out all the bad things what would be left. Life goes on and you can either go with it as best you can and make the most of it or give up. I can’t give up with a 7 year old to care for and a house to keep in order. If I did the bare minimum I would probably feel ok and be able to cope, but that would mean never going out, not being able to do things with my daughter, not having anyone in the house and so on.
I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day. Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up! I go to bed early, but then get fed up of being in bed because I can’t sleep and then need to get up because I am in pain or my mind is driving me mad. I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too. I was in bed at the same time as Emily, but then only got about 4 hours sleep. I can’t sit down for long as its uncomfortable, but I can’t move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn’t want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs! If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much. I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can’t sleep and so it goes on.
What should I do with myself. I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy. Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them. My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.
But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can’t take part or can’t follow conversation. Then wonder why I bother and come across as being ignorant and or stupid.
I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.
I know that I need to do much less, but things just pile up, I don’t work, I don’t do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me. I have just had a letter from the council saying I need a review of the money that pays for my care and help. I need that money to exist, but the effort of justifying it is so hard. Last time they took quite a bit of it away from me, I expect they will do the same again. I know the government need to make cuts and that we can’t expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it. I don’t have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can’t afford to pay for it myself. There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.
I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that’s not fair to him. I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn’t care for himself let alone me. I still get them as I have a child to care for and a husband with health issues, not because I am ill myself. Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won’t find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap! I can’t even walk to the bus stop or even to the end of the street! It’s sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.
My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway. My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more. It’s such a pain always being different though when all you want to do is blend in and be normal. My daughter has been picked on because I am disabled, how cruel is that?! The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can’t hear her or can’t cope with the noise and energy that she has. I try to make sure her life is as normal as possible, but it’s always going to be a bit different. She will always stand out as I need to park in the school car park as I can’t walk from the street parking an issue which continues to cause problems even though she has been there for 3 years. Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.
I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can’t do anything with. I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don’t put much effort into getting ready. I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box. I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can’t do that alongside watching Tv or having a conversation. I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done? Nothing. I have enjoyed doing it, but its not what I wanted it to be. I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more. I really have to try and rest tomorrow as it is this months class on Friday. Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight. But I want to do things, its so frustrating.
I like cooking and baking, but can’t manage the preparation or standing over anything, can’t follow a recipe. Occasionally make packet mix buns with Emily, but only if she mixes it. I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it. My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can’t ring up about it and Rob hasn’t had time and can’t get someone else to do it as they need to be able to explain the problem. Add in my food intolerances and food gets very boring. I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable. I mean what can you have that’s gluten free, dairy free, sugar free, fish free and easy to prepare?! Availability is getting better, but its makes shopping and cooking quite a chore. I can’t go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco’s website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses. If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can’t come out mid shop.
This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much. I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can’t just ignore things or wait for a better time as the better time never comes.
My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.
I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.
My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone. But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.
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Down again!
Feeling rather down again today, had a busy day yesterday. Does anyone else feel that everything is their fault and that people have a low opinion of you even though you try your hardest, its never good enough? I went out to the car this morning and found it unlocked, started telling myself how stupid I was and how it was all my fault and I should be more careful etc, etc, then I thought hang on a minute it wasn’t me who took the car out last and I had just assumed it would be my fault. I know if I mention it to Rob he will blame someone else or just laugh. My oven stopped working last night, blew the fuse and now won’t work at all. For ages the light hasn’t worked and Rob broke the casing trying to change bulb, so we just left it, but I decided I wanted a new unit so the light would work, so Rob took out the old one to check which we needed. So next time we use the oven it blows the fuse, so I am blaming myself for wanting the light repaired, which is now on order and will probably be a waste of money and cost me a new oven instead. I was brought up being told a lot of things were my fault and now I just blame myself or take the blame for anything and everything, but I feel so useless. I am playing the victim? Guess I am, but can’t help how I feel. I went to the well being group yesterday, its supposed to make me feel better, but I come away thinking I shouldn’t be there as everyone else has worse things to deal with than me and I keep quiet about my own issues as they don’t seem important.
I do get some things from going to the group, but the exertion of it is difficult and then I had unexpected demands on my time and energy last night making it more difficult. I tend to take other peoples issues on board and want to sort them all out, but don’t think my issues are important. Being with a group of people with all manner of issues also sparks issues of my own and then because I am worn out today and can’t do much to take my mind off things I dwell on them. Sitting here is not good use of my time and energy, something else to beat myself up about, especially as I am having my hair coloured later which always makes me feel ill and Emily is having a friend for tea at the same time, not good timing, but can’t let Emily and her friend down because I choose to do something for myself that I really shouldn’t be doing. I know I will feel even worse tomorrow and will just want to curl up in bed, no chance of that though as Rob in London, its cleaning day (for the cleaner not me!) and then Rob out in the evening, life carries on no matter how I feel. I am struggling to type getting all the letters mixed up so I do hope that some of this makes sense.
At 5 ways yesterday we again talked about seeing positives and making small steps towards goals. Everyone else seems to do so well and makes progress, whilst I feel stuck. I really need to get back into the seeing positives, it was useful. I read Gratitude in short supply a column written in Psychology Today by Toni Bernhard an ME sufferer who writes about her experiences and has written books too. Also read What is wrong with me another of her articles and they are very good and I can relate to them, just need to put into practice.
Its difficult to have a positive as there always seems to be a but. I went to 5 ways yesterday, but it was difficult and I am suffering for it today. I was able to take Emily to Gymnastics, but I shouldn’t have done, but had no choice she couldn’t have gone otherwise and I can’t let her down because I did something for myself. I got some things discussed with Rob, but it meant I was later going to bed and then didn’t sleep. What looks like a positive always has a consequence for me, its tough, but I know I should be grateful that I can do some things even if they do have consequences. If I always thought about the consequences I wouldn’t do anything, but I know how things affect me and choose to suffer the consequences. Is that right? Is it the best thing for me and my family?
I want to get out of this horrid depressed rut, it doesn’t help me or my family, but what can I do, like everything else I feel awful, but there is nothing much than can be done, apart from me pulling myself together and getting on with things regardless.
I was wondering last night why I write this blog. Yes its an outlet, but many things go unsaid as I don’t know who reads it. I am not normally a public person, so why write something that can be read by anyone who has the internet? I feel that people don’t listen to me, is this a way of just sounding off to anyone who cares to read? I don’t get feedback so have no idea what people think. Did I hope that people were going to come along and make things better for me? I wanted people to understand better, but I doubt that happens and why should people need to understand it doesn’t affect them so they don’t need to think about it or worry about it. If I find it useful that should be all that matters, but again is it the best use of my energy? If I don’t type or write the issues bubble round in my head, if I type or write I get more tired and dizzier and feel generally rubbish so is it helping?
As ever I feel I am neglecting my craft stuff. I have stitched a card which I need to finish off and I have another to start and really want to get the dolls knitted for Emily for Christmas, but don’t get me started on Christmas, it should be banned for people with ME, to much to do, too many expectations, totally fed up with it and more than a month to go.
I need to have a few priorities instead of a huge list of things I want to do and realise that I can’t manage lots of things and when I have a busy day accept that I will feel bad and not try to do much the following day, but it never happens like that and I keep trying to carry on and set myself up for a fall. How can I expect people to recognise my limitations if I don’t accept them myself. Why is it wrong to rest when I need to, why do I feel I have to prove something. I am ill, tired, weak, dizzy, but the pressure piles on every day, will I ever accept that? Of course what is a busy day for me is a fraction of what other people do, so even a busy day feels like a failure. Oh dear another moan, but maybe I can get a bit of rest now.
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