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Back in the Day, Thanks Dave.
Well I did it, I bought the book written by Dave Eldergill about Derby Hospitals. The kindle version was corrupt, so I splashed out on a shiny paperback version. I read it an an evening and wished there was more, hint hint Dave!
It was great to be transported back to a time I remember fondly and to know that someone else did too. If you read my previous blog you will know it was also a heartbreaking time as I never qualified as a nurse due to a back injury and poor health. Who knows our paths may have crossed somewhere along the way, we idolised the 3rd year students. No one in my current life knows about the life I had then, except my Mum and that was only what I told her!
Almost 30 years on I still think of it most days. Where has the time gone? How did I get to be so old and yet still not be any further forward? My husband says I shouldn’t live in the past, but how do you do anything else when the present is hard work and you can’t plan for a future?
Although it was hard, it was nice to be transported back to a time when I could do things and was making progress in my life even if it was cruelly snatched away in the end. It was good to read that someone else had similar experiences and similar feelings about the place and the job.
It seems that Dave is no longer a nurse either, I don’t know why, but it’s not the same job these days. I have no idea how he managed to train whilst having a young family. I can’t imagine being able to do it now and my daughter is 11, but I guess if I was well it would fit into life somehow. My husband says they do train older people to be nurses, which he thinks is a bit of a waste as they don’t work for long enough after training. Even people as old as me apparently. I can start tomorrow if they want me! In my dreams of course.
My Mistake
Another piece of Homework Emily was given was to describe a mistake that she had made, saying
What did you do?
Why did you do it?
What were the consequences?
How did you feel afterwards?
Did you do anything to solve the mistake?
Did you learn anything about your mistake?
How do you feel about the situation now?
I guess firstly it depends how you define a mistake. The literal meaning is “an act or judgement that is misguided or wrong.”
I remember having to do a similar piece of work at University, we called it a critical incident and had to go into much more detail.
It’s quite difficult to decide what is really a mistake, what is a regret and what is a misjudgement. I have many regrets and occasions where I wish I had done things differently, but they weren’t actually something I did wrong.
One of my biggest regrets is losing my nursing training (job) and it wasn’t my fault, but I do wish I had handled the situation differently. It may not have changed the outcome of course.
Back in 1990 when I began my training nurses trained on the job (full time) and studied too, we were part of the ward staff right from the start and changed wards every 2 or 3 months to get experience in different areas. We had blocks of time in school too and course work and exams and we loved it. Most of us lived in the nurse accommodation at the hospital so it was or whole lives.
In my second year of a three and a bit year course I had quite a bit of time off sick due to a back injury, which was a combination of a long standing back problem and a fall at work. I failed a couple of placements, mainly due to time off and then I was told they were terminating my training as they didn’t think I was right to continue (I can’t remember the exact phrases used).
I then had to go to a dismissal hearing where I could challenge the decision. I felt that the hearing was just a formality and that I didn’t really have any choice but to leave. I was told by the Director of Nurse Education that if I carried on I would put myself in a wheelchair before I was 30! Ironically I started using a wheelchair when I was about 31! So everything was against me really and at the time I didn’t have the confidence to question or challenge the dismissal.
I have always wondered what would have happened if I had challenged it and feel that I should have tried harder to be reinstated or tried harder to work despite the injury so that I wasn’t in the situation in the first place. Was that my biggest mistake? I don’t know, it’s certainly my biggest regret. I lost my job, income, car, and home in one fell swoop. I felt like I has lost/wasted 2 years of my life and had to start again trying to get a career. I had a lot of knowledge and experience that was no use anymore. I would still doing anything to change it now, 26 years later.
I did enquire a short time later if I could be considered for a lesser qualification, I was doing SRN training, the was at that time a shorter qualification an SEN, but they were phasing it out. I was told that I didn’t have the correct experience for SEN and that it would be pointless anyway.
Ironically I was able to use some of my experience to work as a carer and care assistant whilst studying later.
The experience left me determined to fight future problems and when I became ill whilst studying I fought to keep my place even though it left me with no income at all for 2 years and still has financial implications as I can’t claim any benefits. I finally got my degree but was too ill to work, I did try for a while and I constantly fight against my illness and it’s limitations, but it doesn’t help. So I still have no job, no income, no identity so still wonder if things could have been different if I had fought then.
I can still remember a lot of people from the course and wonder what they are doing now. I was one of the younger trainees at just short of 19 when I started, you had to be over 17, many were in their 20’s and shock horror I think some were nearly in their 40’s. Nurses could retire at 55 then. I would still walk back in there tomorrow and start all over again if I could, unfortunately I can’t walk far let alone look after other people. I have a family life now, but many people on the course had children, I have no idea how they managed. Nurse training is now a degree course and the hospital and school where I trained were knocked down a few years ago. I think it is going to be or maybe already a housing development, but trying to find information online crashed my computer, so perhaps I should leave alone. the search has thrown up a book about training to be a nurse in Derby written by someone who was there 3 years before me – dare I read it? Tried to download the book to Kindle, but it won’t work, also trying to tell me something!! Bought the book for Kindle, but it is corrupted so can’t read it!! Sadly the hospital site still seems to be undeveloped and just two bits of the original hospital stand all alone, very sad for a building with so much history and it means I can’t go back!
P.S I bought the book!
What do you see?
Over the Summer Emily had a piece of homework. She had to draw 5 Russian Dolls and then inside them she had to write;
- how outsiders see me
- how family see me;
- how friends see me;
- how I see me
- 5 things about me.
I am not sure of the significance of the Russian Dolls, it seems they are used for Psychology theories and treatments and significance given to the size of each of the dolls. Emily did all her dolls the same size, but coloured them differently. At her age I wouldn’t expect her to give different weightings to the categories really, but as adults we might do. Which of those do we put the most emphasis on or which is most important?
I worry a lot about how people see me and how I come across and that people don’t know the real me.
I don’t really know what order I would put the categories in either. I suppose that outsiders are the least important, but it does depend on the situation at the time.
So how do I think people see me? What wasn’t clear in the homework was whether it was how you think people see you or if you had to ask them how they see you. Emily asked us for her family, but guessed the others as far as I know.
I make guesses about how people see me, from the messages (ie body language, comments, attitudes) that I get from them.
Click on show 50 to see full table
| How I think outsiders see me | How I think family see me | How I think friends see me | How I see me | 5 things about me |
|---|---|---|---|---|
| quiet | lazy | complaining | pathetic | I have a post grad degree |
| Ignorant | unreliable | miserable | useless | I try hard to do the right thing and keep people happy |
| lazy | feeble | anti social | unable | I want to work and help people |
| strange | not worthy of respect | awkward | try hard | I want my daughter to be happy |
| stupid | negative | distant | shy | I want to be happy and independent |
| different | ungrateful | sad | nervous | |
| not worthy of respect | disagreeable | pathetic | ashamed | |
| anti social | failure | strong | failure | |
| mean | crazy | bad example | ||
| critical | creative | lacking confidence | ||
| boring | resourceful | introvert | ||
| difficult | pitiful | unhappy | ||
| give up easily | unreliable | old | ||
| awkward | caring | |||
| fussy | try to be supportive | |||
| complaining | disorganised | |||
| ignorant | dependant | |||
| miserable | worthless | |||
| nuisance | slow | |||
| anti social | try to be helpful | |||
| stubborn | misunderstood | |||
| honest | ||||
| guilty | ||||
| negative | ||||
| disillusioned | ||||
| lonely | ||||
| isolated | ||||
| missing out | ||||
| out of touch | ||||
| overwhelmed |
Our perceptions are often wrong and my husband often tells me that people don’t see me the way I think, but they don’t show or tell me they feel different. Some people maybe upset or hurt by what I have written, but it’s how I feel. It’s also possible that some things and people make themselves felt more than others and the good things get missed. I have thought of asking people what they really think, but it’s difficult to get people to be honest, no one is going to tell you to your face that they don’t like you or think you are lazy etc. Of course different friends and family will have different perceptions.
My PA upset me as she came in and said she didn’t know I was up!! I wish, I have to be up at 6.30! do people really think I lounge in bed all day? I do need 2 to 3 hours bed rest a day and am limited to what I can do, but I always try and would never stay in bed and let my daughter get herself off to school unless it was really necessary.
Then there is how much of my illness and hearing loss affects how people see me and whether being ill disguises the real me. Do people see me or the illness?
I have always thought this poem is great;
“What do you see, nurse… what do you see?
Are you thinking – when you look at me:
“A crabbed old woman, not very wise;
Uncertain of habit with far-away eyes,
Who dribbles her food and makes no reply
When you say in a loud voice ‘I do wish you’d try.'”
Who seems not to notice the things that you do
And forever is losing a stocking or shoe;
Who, resisting or not, lets you do as you will
With bathing and feeding, the long day to fill.
Is that what you’re thinking, is that what you see?
Then open your eyes, nurse. You’re not looking at
me!
I’ll tell you who I am as I sit here so still.
As I move at your bidding, eat at your will:
– I’m a small child of ten with a father and mother,
Brothers and sisters who love one another;
– A young girl of sixteen with wings on her feet,
Dreaming that soon a love she’ll meet;
– A bride at twenty, my heart gives a leap,
Remembering the vows that I promised to keep;
– At twenty-five now I have young of my own
Who need me to build a secure, happy home.
– A woman of thirty, my young now grow fast.
Bound together with ties that should last.
– At forty, my young sons have grown up and gone,
But my man’s beside me to see I don’t mourn;
– At fifty once more babies play ’round my knee
Again we know children, my loved ones and me…
Dark days are upon me, my husband is dead.
I look at the future, I shudder with dread.
For my young are all rearing young of their own,
And I think of the years
and the love that I’ve known.
I’m an old woman now, and nature is cruel.
‘Tis her jest to make old age look like a fool.
The body, it crumbles, grace and vigour depart.
There is a stone where I once had a heart.
But inside this old carcass a young girl still dwells,
And now again my bittered heart swells;
I remember the joys, I remember the pain
and I’m loving and living life over again;
I think of the years, all too few, gone too fast
And accept the stark fact that nothing can last;
So open your eyes, nurse, open and see…
not a crabbed old woman.
Look closer… see me!”
Author Unknown
This makes me feel so sad and that we should really try harder to see the person and respect them, we are often not the person that shows outwardly and hate being that person, but it’s often beyond our control.
Time and Tide Waits for No Man or Woman!
All through life we are expected to make progress, meet milestones and improve ourselves. So what do you do when you have an illness that halts progress and self development? And what do you do when you feel like your life stopped 20 years ago and you are still getting older but not moving on?
Twenty years ago I had already had a lot of hiccoughs in my life and things had definitely gone as planned or as they should, with a lot of issues and illness during my schooling and then a back injury killing my dream job! And all that was before I was 21. So there were lots of changes in direction and a lot of hard work as things were never easy.
In 1997 I started a post grad degree, not where I had expected to be, having left school at 17 with 5 Gcse/O’levels to my name. I managed to use my failed nursing career to get onto Playwork degree and then on to a Master’s, a great achievement for someone who missed a lot of school and was never considered very bright! I still wanted to work in health care in some way so a degree in Primary and Community Care should have been the way to go. But as is my luck illness struck again! I was trying to hold down 3 part time jobs and a full time university course, my body couldn’t cope and I became ill with ME diagnosed in 1998.
Time off work and time off the course didn’t help any and although I did finally finish my course 2 years late, I had to give up work in 2000 and I haven’t worked since.
I feel like my life stopped in 2000, so I still expect to be able to pick up where I left off, but of course that doesn’t happen does it as the rest of the world keeps going and I have got older so what can I do now? In 2000 I was 29 so still had to time to build a career, have a family etc, I was a bit behind others, but it didn’t matter too much then. Now I am 47 and no further on. I have got married and had a child, but none of that was straightforward either. Now I am 47 and still stuck at 29 wanting a career and more children, but of course I am too old and too out of touch to be able to do either.
Progress for me these days is measured in how many painkillers I have taken, how many Netflix episodes I have watched or whether I managed to get all the washing done!! Not the sort of progress you want to be measured by.
I feel like I have always struggled and I have always been playing catch up with the rest of the world and just when things look good, I crash back down again. After issues at school I finally pulled through and got some qualifications and got a full time job at 17. I then decided to train as a nurse so left home at 18 and worked, nurse training was on the job then, full time work and studying! I lived in nurses accommodation and bought my first car at 19, life was good. Then it crashed down again and by the time I was 21 I was homeless, out of work and car less. Not much to celebrate.
I pulled myself back up through my 20’s through periods of unemployment, working, volunteering and studying and finally got a degree qualification at 26, but still having no job or sense of direction, enrolled on the Master’s degree. This when my health began to fail big time and as I have already said I had to give up work in 2000 having struggled with no income to get my degree. I still have dreams where I don’t know if I got my degree or not!
During this time I met my now husband, I was working then and studying, so he saw me deteriorate and still stood by me and supported me. My husband was also working and studying for a Masters degree, but he was much younger than me having followed the traditional path of education. In 1999 he got his first job and we moved to Leeds. I was still trying to work part time and finish my degree as we had very little income. I always vowed to finish my degree because I didn’t want to fail at anything else, my life was full of failure. But whilst I was on a the degree course I couldn’t claim any benefits and still can’t as I never collected enough National Insurance Contributions due to mainly doing agency work and several part time jobs.
In 2001 we got married, of course when planning for a special event, we had to have a difficult time with my Grandpa dying just a few weeks before the wedding. I was 30 the day we got married, so we had to decide if we wanted children despite my health, there wasn’t really time to wait and see if I improved. But again things weren’t easy and we ended up having IVF treatment, my other grandad died the day we got the drugs for the first cycle and that one failed and then on my 35th birthday and 5th wedding anniversary, we found out our second cycle has been successful and our baby would be due just after her Dad’s 30th birthday in Feb 2007. We dared to be happy again, but it was short lived with both my Mother in Law and Husband being diagnosed with cancer and I don’t remember much of the pregnancy at all. Christmas 2006 was a total blur with my husband’s diagnosis and my Grandma being in hospital.
We began to pick ourselves back up after Rob’s surgery and diagnosis and look forward to our baby. Emily was born 2 weeks early so arrived 3 days before her Dad’s 30th birthday. Rob was due to start radiotherapy when she was 2 months old, my Grandma died the day before his treatment started. So yet again our early weeks with Emily are somewhat of a blur.
Having two ill parents is not a great start for a child, but with help we struggled through and she was an easy baby and always happy. She got used to being with different people and has always got on well with adults. We wanted a sibling for her, but time wasn’t on our side and medically it was almost impossible so we had to give up after IVF cycle 3 ended with no embryos. We had run out of options, time and energy and needed to focus on what we had. It now seems trendy for celebrities to have children in their late 40’s or even 50’s, but the rest of us are told it’s dangerous and irresponsible.
Why am I writing all this, to prove what I have been through? To get people to feel sorry for me? I don’t know, it just makes me feel pathetic. It makes us scared to make plans or to try and enjoy ourselves as we are always waiting for something to go wrong. Holidays are always difficult as we have to work around health issues, only having one driver, managing luggage etc. Each time we went away we came back to find someone had been admitted to hospital.
Finally plucking up courage last year to take a holiday abroad and to celebrate Rob’s 40th and Emily’s 10th we booked Euro Disney. My Dad died the day we went. I had to go on the holiday for Emily’s sake, but it’s the hardest thing I have ever done and leaves me with bittersweet memories of Euro Disney and again unable to remember much of it. After making the necessary arrangements and having the funeral we had to get back to some degree of normality and there was no time to grieve, I had to do that whilst trying to be on holiday too and never dealt with it properly as you can’t do both and you can’t ruin things for everyone else. As with many things that I need to deal with it has to wait, which means yet again I don’t get to move on. Can you be stuck in several different places/times at once?
This year we managed a holiday abroad and it went well, I felt awful and was so stressed out, but we did it!
Back home I am struggling, everyone is moving on and I am still stuck. I have been ill for 21 years, not worked for 18 years. I have kept going through many things alongside being ill, but it doesn’t make me feel strong or proud of what I have done, it makes me feel pathetic and a failure and that I have let everyone down. Emily is going to high school and is making her progress in life, she did SATS in May and did well and despite all the difficulties we have had she seems to do well. The end of the summer term was crazy with leaving events and high school events, it was exhausting and emotional and left us all stressed and bad tempered. The summer holidays have flown by and I haven’t been able to do as much as I wanted with Emily and I get cross when she makes too many demands on me as I am always so worn out and struggling with symptoms. This isn’t fair to her or anyone else and makes me feel guilty on top of everything else.
Her growing up makes me feel left behind and makes me think about how I messed everything up and can’t hold down a job or make anything of myself, which is what life is all geared up to. We are put on this earth to learn, grow up, make money and reproduce and I failed at them all. My life seems to be all hard work and loss. I am not saying I have it bad, I know people in much worse situations so then I feel guilty about that too. I still feel I am waiting to achieve something and make progress, but at my age these things aren’t possible anymore, even if I became well enough. I’d love to train for something new, but who would accept me. I’d love another child, but my body is past it, and I wasn’t able to grieve for the children that we created, but that didn’t make it, as you have to move on and forget about it. So life moves on without me catching up. At the same time I haven’t had chance to grieve for what I have lost as I have had to move on and try to keep going and trying to catch up.
The events haunt me and trouble me most days along with poor health and low energy, they make me miserable, irritable and isolated. Then I come across as impatient, rude, unemotional and unreasonable, none of which I intend or want to be.
How do you come to terms with events that are in the past, some of them 30 plus years ago?
How do you accept them and understand that they were not done to punish you or to make life difficult?
How do you be happy within limitations?
How do you find something that can fulfil the desires, without becoming even more ill?
I keep saying I am going to pull myself together and deal with these feelings and move on, but I don’t know how and even if I try something else comes along that requires my attention and energy so the issues get moved to a back burner again as life doesn’t stop and wait. How can I feel like I haven’t done anything, yet have no time to do things?
I worry about the effect on my family too, we all seem to be unhappy and irritable at home, but put on a brave face for others. We are not very good at accepting feelings and if any of us is upset or angry we say that they need to calm down or not be upset. Feelings are not wrong and should not be dismissed, but I guess it’s easier to dismiss that acknowledge in the short term, but then they just keep bubbling up. Feelings aren’t always negative, and people don’t get dismissed for being happy, although we do often tell children to calm down if they are excited, no wonder we all get confused.
So where do I go from here?
Oh I Do Like to Be Beside the Seaside! But It’s Hard Work
Summer holidays have started and most people are going away, looking forward to travelling and seeing new places and either relaxing or having new adventures. For people with ME/CFS (and other conditions I am sure), it’s a difficult and for many impossible.
I like going to places and seeing something different. Choosing a holiday for us has to take into account my condition, Rob’s medical needs and the needs of an 11 year old, none of which are very compatible!!
A few weeks ago I went to Scarborough for a respite break, but ended up quite badly scalding my leg! Travelling on my own is very difficult even though Rob drops me at the train ( I can’t walk to platform) in Leeds and then in Scarborough I don’t have far to walk for a taxi, it was exhausting. I didn’t get to see the sea as it’s a 10 min walk from hotel and when I looked at getting taxi there weren’t any available. it does seem a bit of a waste of a trip away, but there are no chores and I get all my meals. Helen who owns the hotel had broken her wrist a couple of weeks before, and was still able to do more than me, including sorting me out after scalding my leg. I did begin to wonder if I was meant to be able to have a break without something going wrong.
Last year was the first year we went abroad since having Emily. After so much agonising over whether we could manage it with my health, Rob’s and and Emily we bit the bullet and booked to go to Euro Disney. My Dad died in the early hours before we left so it was a very difficult holiday, but not for the reasons we expected. It wasn’t a good start to holidaying abroad and added to our feeling that holidays are fated. We did manage a break in Cyprus staying with family, Emily’s first time on a plane! Having managed this we decided that we would try again to do something this year. We spent weeks trying to decide where to go as we wanted local flights, short transfers, reasonable flight times and somewhere not too hot and not too busy. We wanted to do Lakes and Mountains, but nothing met our criteria. We looked at Switzerland, Austria and Italy. It was very disheartening. We were thinking of giving up, but then did a random search and found a compromise, just hope we have got it right.
Once booked of course there is then finding travel insurance. ME doesn’t seem to be an issue, but someone who has had cancer is more difficult even if it is nearly 12 years ago. As we are travelling in the EU medical issues shouldn’t be a problem, but with Brexit looming we don’t know what will happen in the future and we are unsure if we would be able to get cover further afield, but that is currently way out of our comfort zone anyway.
As a child we didn’t have a holiday every year, but when we did, it was an adventure, so I am not used to sitting on a beach or round a pool for a week. I like to see the sights, but with very limited energy and in a wheelchair this is not easy or perhaps the best thing to do, but if I have got there I am going to make the most of it even if I do feel dreadful, but it’s not always possible and there are days when I can’t, which seems such a waste especially when only away for a week.
Eating is very stressful too having several food intolerances that make me very ill and not knowing what is safe or not. I often end up eating salad and fruit, which is fine if it is hot, but not very calorific and energy boosting. Add into the equation Rob has to make sure he doesn’t get a stomach upset or he will be hospitalised and a fussy 11 year old, it’s a nightmare before we even get there.
Last year I managed to forget my essential medication. I spend that much time making sure Rob has his as it is time critical and dangerous if he doesn’t have it that I forget my own stuff. Thankfully we managed to get what I needed as it is available over the counter in Cyprus, it would have been a different story if we had to contact the Drs to arrange it. But it’s not how you want to spend the first day of your holiday. I had also forgotten Emily’s allergy medication so had to get that too, but then couldn’t read the dosage instructions, aggghhhh. Anyway I managed not to overdose her. This year I have my medication packed well in advance! I have to pack in advance so I am not rushing around too close to going away, but it’s still too stressful and I wonder why we are doing it. I need someone to pack for me, but they need to know exactly what I need so it’s easier to do it myself and travelling with a husband and child means I have to make sure they have what they need too. It takes ages to pack even though we don’t need a great deal.
I feel guilty for complaining as I am lucky to be able to go away at all, but it’s not relaxing and fun, but it is good to get a change of scenery and to be away from household chores. Being away for a week is all we can manage, but it’s takes time to recover from travelling there and back, so it’s a permanent struggle and we have often thought that it might be better if we didn’t go anywhere. We have booked a room with a balcony so I hope it has a good view, knowing my luck it will overlook the bins!! There is a pool which should keep Emily happy, but she always wants someone in with her and or want us to watch what she is doing constantly. Before we had Emily, Rob and I were happy to saunter around or read, but there is no chance now.
Now I am wondering if it is fair to send a postcard to someone who is too ill to go away, is it a nice thing to do, or just being cruel? Why is everything a dilemma? And of course sending postcards is another chore!
There are so many places I would love to go and I know everyone has dreams, but I feel that I would be able to do some of them if it weren’t for being ill and having to take everyone’s needs into account. People tell me we should go on a cruise as it is easy, but to me it sounds like a nightmare. I love boats and would love a cruise and these days you can get child friendly ones and wheelchair friendly ones. I’d love to do Norweign Fjords or go to St Petersburg or an Alaskan cruise. The main issue for us apart from price is that we need to be near a hospital as if Rob gets a stomach bug he needs to have his medication IV in hospital. You hear a lot of stories of cruise ships where most of the passengers get stomach bugs, which is miserable, but for us it would mean Rob would have to be taken off the ship and I am sure that no one would insure us for that.
Every time I watch Poldark I want to visit Cornwall, I went several times as a child. Again we can’t do this as we only have Rob to drive and he doesn’t like long distance driving and it’s not fair to him to be the only driver and again if he got ill we would be stranded. We thought about going by train, but to be able to get around when we were there we would need to hire a car which just makes the price ridiculous.
I could ramble on all day, but perhaps I better stop and be grateful for what we are doing and try to enjoy it and not be too stressed before we even go as that is not going to help.
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.
Birthday Blues
Well it’s that time of year again, how did June arrive so fast. This weekend is my 47th birthday and my 17th wedding anniversary and 12 years since I discovered I was pregnant with Emily, lots to celebrate, but the overwhelming feeling is that another year has passed and I have not got any better, not got a job, not being the Mum I want to be. This year my daughter goes to High School and will become more independent (hopefully), but where does that leave me? Stuck at home even more, no job prospects. Every birthday and New Year feel this way.
By the age of 47 most people have progressed in a career and brought up a family. Not me, I haven’t worked for 18 years. I started my first job in June 1998, 30 years ago just before I was 17. I didn’t know what I wanted to do at that point, but I had a full time job and an income, even if it was only £27 a week!! The only income I have now is £20 a week from what is left of my DLA after paying for my Motability car. In 1994, 1995 and 1996 I had student loans which I have never paid off as I haven’t earned enough to do so. I have to defer each year, letting them know that I don’t work. This year I had to also provide a letter from my husband as they wouldn’t accept my income, so he had to say he supports me.
When we are kids it’s so exciting to have a birthday and we celebrate each year, but once we get past 21 we seem to be ashamed of our age and don’t like to admit how old we are. Then it seems when you hit about 80 people become more relaxed with how old they are and take pride in telling anyone who will listen their age. We are the same with our cat, and amazed he is still with us at 19. The oldest cat reached 38, so he is only halfway there and I can’t see him lasting that long.
A friend that I have kept in touch with from school has a son who has just turned 18, it doesn’t seem that long since we were 18. Someone asked me the other day if I always get good weather having a June birthday. Not a chance, my Mum tells me it was cold and wet the day I was born, my 18th birthday was very hot and then my 30th, the day I got married was cold, wet and windy. The forecast for this year is rain, cloudy and a chance of thunder!
Being unwell it’s difficult to know how to celebrate birthdays, luckily this year it falls on a Saturday so I will be able to get out for a bit, but then will have to spend time in bed to recover. There won’t be any late nights or drinking alcohol, we off to see some cats and have a cup of tea at Kitty Cafe Leeds . They have some interesting sounding teas, so cats and tea that’s me sorted. Having a gluten free, dairy free, low sugar diet means no birthday cake, but we have bought a mix by Free and Easy which is very yummy and ticks all the boxes! Just have to find the energy to make it with Emily’s help. We are planning a party tea, but most party food full of gluten, so not quite sure what it will be yet.
It’s nice to get presents, but as you get older it’s more difficult and people ask you what you want or tell you what they are getting you, so no surprises. I spend hours looking at clothes, shoes and craft items, but I don’t need any of them, and then get upset about not being able to wear nice clothes or shoes or having the time and energy to do crafty things and tell people there is not much point in buying them. Or if I do get them, I feel guilty for not making good use of them.
I like to buy people things they want, but also try and get them a bit of a surprise and always try to get it to them for their birthday rather than waiting until I see them. I always send cards in the post in plenty of time as it’s nice to get cards in the post, as a change from all the junk and bills normally in the post. I still find it a bit strange having to give my husband cards and presents on my birthday with it being our anniversary too! This year the day after my birthday is Father’s day. It is always around my birthday and this year will be the second year without my Dad so mixed emotions again. My Dad’s birthday is the end of May, so his face popped up on my Facebook feed as a memory, and there is a good one of me and him and my wedding day, memories crop up all over the place and catch you unawares.
We used to go away in June as it was quieter and cooler, but since Emily started school we haven’t been able to. At Emily’s high school they don’t have Spring Bank holiday week off, but they have 3rd week in June, next year they break up on on the Friday as my birthday is on the Sunday, so we might get to be away 🙂 but my birthday will be Father’s day 🙁
I am trying not to do too much in the run up to my birthday, but other people have other ideas. My PA went off sick, but is now thankfully back. I was so worried she would be off a long time or would decide to retire. Today I had physio, tomorrow we have an information evening and then on Friday I have an hour long appointment to go to. Timing of things always seems rubbish, but I guess that’s partly because there is never a good time. I am waiting for 2 other appointments and both of them came up for this week so I had to change them. The appointments are supposed to help me, but often the effort of going to them outweighs any benefit and I get stressed about fitting them in and getting there and back etc, it’s so frustrating. I don’t like having to cancel things or be dependant on others, it makes me feel so useless.
Well whatever happens I will try to enjoy my birthday and I will go out and stuff the consequences! So is 6-45pm too early for bed?
Bleurgh!
Bleurgh! Apparently that is a word, I looked it up! It is how I feel at the moment along with being very down and lacking energy, nothing new, but feels like a hard slog at the moment. Things take so long to do and lots of mistakes are made due to Brainfog. My new jumper is very appropriate at the moment and I am wearing it today. (from Unchargeables) Well I was when I started writing 2 weeks ago, wonder how much longer it will take?
Card making, slow but sure at the moment, here are the ones I can share with you.
Made for a friends birthday using Tattered Lace Dog die, and Marianne Oval die (which I bought pre cut) mounted what I think is Forever Friends black and white backing paper sample.
This one was made for my Mum, she has just had her garden done and has been planting roses, we were also talking about Alice in Wonderland where they paint the roses, so that was my inspiration. Pattern from Stitching Cards, background paper printed from Etsy
This hedgehog is cut using Sweet Dixie die. The leaf is from a pack of autumn coloured leaves from The Works.
This card was made using an old Sizzix Dove die cut, the frame is Sue Wilson Springtime die. The frame is in 2 parts the back piece I stamped with shades of blue ink and the front piece left blank with a few gems added. I used this for a sympathy card, but would also be suitable for birthday or baby boy in this design. I have since done one in green for a wedding anniversary, but don’t have a picture of it.
This owl is a Joanna Sheen signature die, its cut in black card, mounted on Marianne Oval die (which I bought pre cut), the sparkly card underneath is embossed with owls, (not really visible in the image) Concepts Emboss and finished of with a bow and heart shaped button.
This card was made for my daughter to wish her well in her SATS . The pattern is from Form-a-Lines, stitched in gold and purple for school colours. The shapes stitched on are Nestabilities dies, Rectangles and Squares. Background paper printed from Craftville, I think.
For this card I created my own pattern, with help from Rob. As it is a simple outline , it is easy to convert to dots and make a pattern for stitching. For those who don’t know it is Sheffield Wednesday’s owl logo, mounted on blue and white stripes as that is the colours they play in. Perfect for any fan.
Another black and white card, I think they work well. This is a Broadroot Die, mounted on Marianne Oval die (which I bought pre cut) and backing paper I had in my stash. Used little gems for the bubbles. The die does cut little bubbles but they are so tiny and fiddly.
Another card made with a Sweet Dixie and mounted on leaf, embellished with little shaped buttons.
Finally a card made with a ready made papercut which I have had for a while. I have always thought it very pretty, but couldn’t decide how to use it. This is mounted on blue sparkly card and I think it works well.
This week I added some more cards to my shop and hopefully more to come soon, it takes so much time and energy and I make so many mistakes along the way. The most recent ones are royal wedding themed and on a special price. Sadly the images do not do them justice, they are very sparkly and much prettier than they look here.
Oooo and one I missed,
For a couple in their new home, they enjoy baking. Made with Iris card template from Dee Crafts.
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