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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?
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?
Daily Living with ME pt 8
Way back in 1990 I began training to be a nurse. It was great, I loved it so much, but sadly like many other things in my life it was brought to an end by ill health. When we were assessing patients we used a model called Activities of Daily living devised by Roper Logan and Tierney.
This was brought to mind recently when my Mum asked for help with the assessment of my Dad’s abilities and needs with his Parkinson’s disease. It’s amazing what you remember after 26 years, yet can’t remember what you did yesterday!
It has set me thinking about my own daily activities and limitations and the effects they have on me and my family.
The model uses the sections;
• Maintaining a safe environment
• Communication
• Breathing
• Eating and drinking
• Elimination
• Washing and dressing
• Controlling temperature
• Mobilisation
• Working and playing
• Expressing sexuality
• Sleeping
• Death and dying
Everyone who has ME/CFS has different needs and limitations, I can only portray my own.
I thought I could write a blog about each element so this one will be;
Mobilisation
Mobilisation – “the action of making something movable or capable of movement.” (google)
As someone who used to walk everywhere and had jobs that involved being on my feet all day, losing my mobility has been hard. I am not a person who can sit still and do nothing. In the literal sense I can walk and I potter around in the house, but out of the house I can only do very short distances on the flat and mainly use a wheelchair or mobility scooter. Not being able to walk makes every day routine very difficult and makes me very dependant on others to get around. I have used a wheelchair for about 16 years, but will never accept or get used to it.
I have a Motability car, but due to the new PIP criteria I am probably going to lose it when my benefit changes, but I have no idea when this will be. The uncertainty is difficult and my car is due for changing this year.
I have a Blue Badge which makes parking a bit easier, but often is of little use if I am on my own or with my daughter as I still can’t walk to our destination. For example at the local supermarket the disabled bays are a long way from the shop and I can’t walk from the bays into the shop to collect the mobility scooter at the information desk. I need someone to push my wheelchair and my mobility scooter is too heavy to get it in and out of car. The only time I find the Blue Badge spaces useful are for collecting my prescription as they are right outside the chemist, but they are not easy to get in and out of and are often taken up by non disabled people. When I went to the chemist the other day, out of 5 disabled spaces, only 2 of us had blue badges. Having a Blue badge also means I can have a disabled bus pass, but I can’t walk to the bus stop and there are a lot of issues about taking wheelchairs on buses.
Not being able to walk far makes every day life difficult, I can’t take and collect my daughter from her classroom, I have to have permission from school to park in school car park, I can’t take my daughter to clubs or events, I can’t go to places without someone with me to push my wheelchair. Being a Mum I miss out on doing things with my daughter and have since she was a baby as I wasn’t even able to take her out for a walk in her pram. I can’t walk her to school, except in good weather (rare event) when I can use my Mobility scooter, but it’s not the same as walking along holding hands and chatting. I can’t walk to local shop or post box or take my daughter places without help. My daughter is now able to push my wheelchair a bit, but soon gets tired or bored and it needs someone to get it out of the car!
Being in a wheelchair is very isolating as the person you are with is behind you, my daughter has to walk along on her own often in front or behind us which she hates. When she was little at least she could sit on my knee. My daughter gets very upset as she feels left out when we are out and about and also gets very anxious in busy places.
I also have a walking stick, but in reality it is more of a nuisance than help, something to drop or trip over and you can’t hold a bag or child’s hand easily at the same time. The advantage is that it shows people you might be a bit slow or unsteady, but it doesn’t mean they respect that!
If I walk too far I will end up in a lot of pain later or really exhausted. A few weeks ago I walked a little way down the street and then spent 2 1/2 days in bed! If I am really pushing myself I will end up literally unable to put one foot in front of another and this happens in a very short distance. The effort of walking means that I can’t concentrate on what is around me. Being in a shop is awful as I get so disorientated due to walking and all the visual stimuli around me, and that is in a very small shop.
I am dizzy all the time so am easily disorientated and often stumble or trip over things.
I have rails on both sides of the stairs, but stairs can still be a struggle and I can’t manage more than one flight. We have a downstairs toilet and I have a kettle in my bedroom to try and limit trips up and down. It is most frustrating to get up or down the stairs and find you left something you need where you came from. I often feel disorientated coming downstairs because of the dizziness.
Although I do drive, I can’t drive far, so only do the school run and get myself to appointments locally and collect prescriptions. This is very limiting and puts a lot of pressure on my husband who works full time. I live 40 miles from my family who are having a lot of problems at the moment, but I am unable to get to see them without my husband, this makes me feel useless and a burden and also very isolated.
Using a wheelchair is not much fun, I am always at the level of people’s arms, bottoms and bags. People tend to have no respect at all and will obstruct me. Being in the wheelchair still doesn’t mean that the outing will be easy as sitting is uncomfortable and I can’t see or access things easily. Also being out usually means there is a lot of visual stimuli and noise which is very tiring. Being pushed along can make me very dizzy especially if the person pushing thinks it is fun to mess about and swing the chair around or go very fast, it might be fun for them! I also get very cold sitting in the chair so it needs to be pleasant weather and then I still need to be wrapped up warm and have a blanket. I have a thick memory foam cushion to sit on which helps with the discomfort of sitting, I can’t use a wheelchair without one. I also need the footplates, I see so many people in wheelchairs without footplates, but it is so uncomfortable to have your legs dangling. The other advantage of footplates is that they do protect my feet a bit when I get pushed too close to something which often happens as the person pushing can’t see my feet properly, I’m glad I don’t have big feet!
I find using the Mobility scooter hard work as you need your wits about you in case people walk in front and of course you need to control where you are going. I don’t use mine a lot, occasionally for taking Emily to school or for going down into the local shopping area with Emily. I rarely use it on my own. The scooter is too heavy to put in and out of the car, Rob can manage it, but it’s not something he could do all the time. I occasionally use the scooter in the supermarket, but they are big and clumsy and it’s hard to move around and do shopping. It is a little easier now I can tell Emily what we need and she can find things and she is good at packing shopping bags.
With me not being able to walk this also has an impact of the amount of exercise the rest of the family do as we have to use the car far more than I would like and it’s not really possible for Rob to push my wheelchair that far. We have in the past done longer walks and even mountains, but it’s not really possible now with Emily as well. Taking Emily to school by car means she doesn’t walk much and I can’t take her to the park or out for a walk. I feel she misses out quite a bit because of my limits, she gets upset if school ask for people to help out on trips or walks as she wants me to do it and I would love to.
People say it must be great to just sit and be pushed everywhere, but I hate it, I am not a lazy person and I like to do my own thing. In the wheelchair I see what the person pushing me wants to see and go where they want to go. People also tend to think that I must be stupid too and either ignore me or talk down to me. If people see me sometimes in my wheelchair and sometimes walking they think I am lazy. I only walk very short distances eg picking Emily up from school. Why do people think that all disabled people are lazy and stupid?
I have physio once a month which seems to help the stiffness, pain and spasms, I don’t think it makes me more mobile, but it may be preventing my mobility getting worse.
Having the wheelchair means that I am not stuck in the house as I would be without it, so it is helpful, but I am very dependant on others to get out and about which is very frustrating. Many places are difficult to get around, some places totally inaccessible. I have seen lifts that don’t fit the wheelchair and a person and lifts where I need to fold footplates in to get in! Surfaces need to be fairly smooth, the wheelchair gets stuck in gravel and sand, grass can be awkward and cobbles are very uncomfortable both for me and the person pushing.
Daily Living with ME pt1
Way back in 1990 I began training to be a nurse. It was great, I loved it so much, but sadly like many other things in my life it was brought to an end by ill health. When we were assessing patients we used a model called Activities of Daily living devised by Roper Logan and Tierney.
This was brought to mind recently when my Mum asked for help with the assessment of my Dad’s abilities and needs with his Parkinson’s disease. It’s amazing what you remember after 26 years, yet can’t remember what you did yesterday!
It has set me thinking about my own daily activities and limitations and the effects they have on me and my family.
The model uses the sections;
• Maintaining a safe environment
• Communication
• Breathing
• Eating and drinking
• Elimination
• Washing and dressing
• Controlling temperature
• Mobilisation
• Working and playing
• Expressing sexuality
• Sleeping
• Death and dying
Everyone who has ME/CFS has different needs and limitations, I can only portray my own.
I thought I could write a blog about each element so this one will be;
Maintaining a Safe Environment.
One of my main symptoms is dizziness which means that I often walk into things eg door frames, tables etc and if there is something to trip over I will. My special awareness is impaired and gets worse with fatigue
Before I do an activity I have to assess whether I am well enough and therefore safe enough to do it, I often misjudge my own ability and end up in a pickle (a very technical word for it!).
Having a child in the house means I also have to be aware of her safety and if I can trust her to do something like making me a hot drink if I am unable or if she is trying to help me. Thankfully she is normally sensible and will ask me if she can do things she is not sure of and as she gets older I can ask her for help with things if she is in the right mood. But I can’t fully relax as I still need to be aware of what she is doing.
I am not supposed to have a bath without another person in the house due to my dizziness and difficulties I may have getting in and out of the bath.
My concentration is impaired so I am liable to switch something on and then forget about it or start doing something and then get distracted and forget to go back to it. This may have safety implications and I am always worried I have left something switched on or forgotten to lock door etc and then use energy worrying or having to go and check up on things.
I have extra rails for stairs and bathroom.
I have to be careful when standing up as my blood pressure falls and can make me very dizzy and I need to stop until it settles.
I manage my own medication, but often forget what I have taken. I try to note what I have had, but that is not always fool proof either. I keep all my medication together and sometimes take the wrong thing at the wrong time due to my brainfog, but then I feel so stupid and cross with myself
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When using my mobility scooter, I need to be aware of what is around me and whether it is safe to move. People are very inconsiderate and walk in front or won’t give me room to move, but it takes a lot of energy to be alert enough. It is my responsibility to be make sure that I am being safe for them too.
We have smoke alarms and a carbon monoxide monitor, but I am not sure if I would hear them during the night due to my hearing loss and not having hearing aids in when asleep.
Useless.com
I spend a lot of time feeling totally useless, and guilty. Last week was particularly bad after, trying to sort out my craft stuff and move it to be more accessible, but of course when I do anything like that I have to pay for it and have landed myself in bed a few times from trying, but it’s getting there slowly and I can see better what I have got (far too much) and of course found lots of unfinished stuff and had lots of ideas for using things, but never the time or energy. Also On Friday Emily and I tried to take part in Rivers Meet Give a Duck an outfit which is a group making outfits for Chemo duck, cuddly ducks given to children having chemotherapy. I should have known it was beyond me, I needed to be able to sit in a noisy room, follow a pattern, sew, cut out and have Emily with me, I lasted about 15 mins! Plus part of my sewing machine was missing so couldn’t use it and had to buy a new bit! I was so disappointed and was in floods of tears after looking really stupid, letting people down and setting a bad example to Emily. I am not really sure why I thought I would be able to do it anyway, my sewing skills are very basic and I can’t follow recipes or patterns, but I thought it was a nice idea and Emily wanted to join in. I was feeling so bad when we got back home, I had bought a scone to eat, (gluten free!), which I rarely do and I wasn’t able to eat it before we left as Emily and I were so upset. When we got home Rob asked if I wanted the scone, I replied why should I treat myself? I allowed myself half of it a bit later on and the other half a day later. I posted a Facebook status saying “so upset with myself today, I really hate this illness and its stupid effects on me and my family, feeling useless”
There is also a course I would love to do on Play Therapy as a qualified Playworker with some knowledge of play therapy it really appeals and is on an offer, but it is up 150 hours of work. At best I would manage an hour a day when Emily is at school and some days even that wouldn’t be possible and would mean I wouldn’t be able to manage any craft and would take me the best part of a year. Again I got really upset and felt so useless, other people study on top of full time work and family commitments. Gaining a qualification wouldn’t be of any use anyway if I can’t work and would just add to my other unused qualifications, that is assuming that I would be able to do it which I might not with finding reading and understanding very difficult. I am still tempted just for the material without getting the qualification.
Yesterday Emily was upset with me as she wanted me to go and play a game outside with her, but I can’t play physical games and it is too cold for me to be outside and just sitting. I did manage to rescue the situation by letting her throw a ball inside and we had a game of catch with me sat down which seems to have pacified her for now, but doesn’t always work. My husband quite often refuses to play physical games with her too, he has the ability, but may not feel like it or want to when she asks, he doesn’t feel guilty, but then I feel guilty because I can’t do it and because he doesn’t want to and because she doesn’t have siblings or friends to play with and so on!
It feels like everything I can do or can’t makes me feel useless or guilty in one way or another. I am definitely guilty until proven innocent!
So true Charlie Brown
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ME and My Mum 20 Questions.
There is a set of questions going round on Facebook at the moment that you are supposed to ask your kids. I tried it on Emily, she was not impressed as said why are you asking me these you know I don’t know, but some of her answers were quite enlightening and a reflection of how the ME affects us as a family. Emily’s answers are in blue.
1. What is something your Mum always says to you?
Shut up, be still.
Sadly true, at times I am really sensitive to noise and hustle and bustle and I can’t concentrate on things in a noisy or busy environment which a house with a child is most of the time. I hate telling her to be quiet or quieter, but she is so loud and never stops talking, but I don’t think I ever tell her quite so bluntly as “shut up.” I do ask her to be still if we are watching TV or playing a game as again it is very distracting and also makes me feel sick and dizzy, but she is never still. I worry that she needs more exercise.
2. What makes you happy?
My bedroom and birthdays, (anyone’s birthday)
3. How does Mum make you laugh?
Tickles me.
True but there is a limit to when I can do it and how much 🙁
4. What makes Mummy sad?
Daddy sometimes and me doing too many cartwheels.
True, Rob and I do disagree a lot about things as we are both tired and irritable a lot of the time and have different priorities and approaches to things. She is always doing cartwheels and there just isn’t the room in the house, but she does them anyway!
5. What was Mum like as a child?
I don’t know. Cheeky?
Ok fair point, not much is said about when I was a child. I would not have got away with cheeky though Emily.
6. How old is Mum?
43
True, but only for a few more days
7. How tall is Mum?
No idea, about 2 metres?
Lol I had to check, but that is 6ft 7, I am about 5ft 3!
8. What is Mum’s favourite thing to do
Get out of the house or have a bath
Pretty accurate, given my limitations.
9. What does Mum do when you are not around?
Sleep or computer
Partly true, I have to rest, but don’t sleep, but I lay on the bed which to her means sleep. Yes sadly I do use computer a lot, but its not all that I do.
10. What is Mum good at?
Craft
I don’t think I am that good at it, but it’s what I do given the chance, but its not easy and often stresses me out.
11. What is Mum not good at?
Cartwheels and Gymnastics
True, but she has never seen me try!
12. What does Mum do as a job?
Nothing
True, sadly
13. What is Mum’s favourite food?
I don’t know, is it fish?
Well to be fair I do like fish, but I am allergic to it, so she has never seen me eat it as it literally makes me sick.
14. What makes you proud of Mum?
I have no idea, making bracelets maybe?
Sad answer
15. What do you and Mum do together?
Watch TV and make things for charity
Ok fair enough. The charity things has come from Emily deciding last night that she is going to make bracelets from pipe cleaners and sell them for my charity, no idea how she plans to sell them, but she has a big bag of them made and says they are 10p each. She has us all making them.
16. How are you the same as Mum?
Sometimes we have the same clothes in different sizes.
True I do sometimes buy kids clothes and we have a few items the same
17. How are you different to Mum?
Hair
True
18. What does Mum like most about Dad?
Funniness
Sometimes I guess when it doesn’t drive me mad!
19. Where is Mum’s favourite place to go?
Rivers Meet and Salute
This is probably because these are the only places I do go. Rivers Meet is a cafe, I do like it, but the noise gets too much and I am not able to enjoy it as much as I would like, we do go there for lunch sometimes at the weekend as otherwise I only get out to do school run. I used to go to a quilting class there too in a quieter upstairs room, but it has moved and I can’t go any more as it is too far away 🙁 Salute is a restaurant, we used to go in quite a lot, but now I find it too noisy and find it difficult to find suitable things to eat, even though they do Gluten free its difficult to find things with my other intolerances. It’s also quite expensive and we can’t afford it that often, its amazing how much different eating out for 3 is to 2. Emily likes it much more than me and some of the staff have known her from being a baby so they make a fuss of her.
20. How old was Mum when you were born?
In her 30’s, from my working out 35
True, the Maths homework is paying off!
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Fundraising Update – How do you raise awareness and money whilst keeping within limitations?
Well it’s all going well so far, I have got £240 donated, which is nearly half way to the target I set, which was actually totally random, but would be great if I could reach it.
My promotional goodies have arrived and I have spoken to Emily’s teacher and am hoping that the children will be able to do something princess related 🙂 I have also got some Princess light up balloons :-0
In June we had a photo session booked, but due to another commitment needed to cancel it, but then I saw there was a session on May 10th, the day I am planning my Princess dress up, so I am hoping we can change to that day, it will be great, but exhausting!
It’s so difficult to know what is best to do, I mean how do you raise awareness and money and keep to limitations? At times it is exhausting just thinking about it. Even writing the blog and setting up the giving pages takes effort especially as I don’t have a laptop or tablet so have to sit at my desktop. Getting involved and going to events is not a good demonstration of ME as no one can see the effort that it takes and the consequences after as we go in there with a smile and join in as much as we can. I know I am pushing my limits, I am struggling quite a bit as it is with pain, fatigue, dizziness, brainfog and tinnitus being very bad at the moment, so I am actually doing myself any favours by trying to do this? But its too good an opportunity to let it pass by or to hope that someone else will do it instead.
I am trying to get people to donate direct to my just-giving page, to save me having to collect and donate on peoples behalf and if people donate for themselves they can claim the gift aid. I am also determined not to chase people for money, when we have done sponsored events before I spend so much time reminding people they said they would donate and trying to get money from people and then ending up putting a lot of it in myself, its really not worth it. If people really think it is a good cause then they will make the effort to donate, if they don’t I think that is probably the true reflection of what they think about the cause or the person trying to raise money, sorry if that sounds harsh. Having said this Just giving is not working at the moment, which is not very helpful, but it’s probably because everyone is making donations following yesterday’s marathon.
I had a giggle at this
but seriously for a person with ME, just getting out of bed can feel like a Marathon.
I am going to be joining in with the Team Princess auction on May 12th. I need to sort out some things to donate. If any of my crafty friends have anything they can donate, it is all for a good cause. The organisers want to know details of any items by May 5th.
I am also following with interest Knit and Tulip for ME, they are currently doing a campaign for knitting tulips to go into public displays, the first being in London on May 14th. I really want to join in and knit, but know that I won’t get chance before May 14th, but they are still collecting afterwards. (The pattern for the Tulips is on the site). They are also every day during April, listing an ME symptom or how ME affects us each day, up to day 26 I have all the symptoms 🙁 Sad but true. This also makes me feel awkward about trying to raise awareness as I don’t want to sound as if I am moaning or wanting people to feel sorry for me, I know there are many people in much worse situations and many more worthy causes. Hence my comments yesterday saying;
“Still time to donate to my Princess for ME event https://www.justgiving.com/Jane-Shaw5, read about it here http://poohbear71.blogspot.co.uk/2015/
I know it’s not the most important thing to donate to, but it means a lot to me and every bit helps, so please give if you can. If you are not able to give, please spend just a few minutes finding out the effects of ME at sites like http://www.actionforme.org.uk/ or http://www.meassociation.org.uk/, many thanks”
Lastly as I am now very dizzy and in pain and feeling sick and its only 9.30am!! I saw this and will definitely be printing some off for my publicity information
and a few others I might use if I have the time and energy to print them off.
(I don’t have the energy to put make up on and wash and dry my own hair, but still like this one)
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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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