Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts

Monday, October 09, 2023

Keeping up appearances

 I was talking a to a friend today who is having Chemotherapy as part of a treatment for her MS. Knowing that she was going to lose her hair, a few weeks ago she had her hair cut short and donated her hair to the charity that makes wigs for children with cancer, a lovely thing to do. After getting used to her new short style, which really suits her, she is now at the stage that her hair is falling out and the next step is to shave the rest off. It got me thinking that the main thing people worry about when having Chemo is the hair loss and they feel self conscious and worried about how they look. Most people having Chemo shop for wigs and or hats before treatment. This of course does give them a bit of control over what is otherwise a very difficult treatment and something that is often done alongside having to get used to the shock of diagnosis too. As I said this friends donated her hair to be made into wigs for children, but maybe there could be a way of having people’s own hair made into a wig and make them feel more themselves.

Amy Dowden from Strictly come dancing is currently undergoing treatment for cancer and has shared videos of her shaving her hair off. On Saturday night she appeared on live TV without her wig, she looked amazing and I am sure she probably felt awful.

So why is our hair so important and why do we feel so ashamed of losing it? If you are having chemo it is often the only indication of the damage that Chemo does to the whole body, but it also shows what you are going through and people should be proud of what they are doing. Ironically the professional dancers on Strictly this week did a number where they were all wearing wigs as they danced to a Barbie theme. They all looked so different I couldn’t tell who most of them were. Changing hairstyle and colour is often something we do to make ourselves feel better or happier about ourselves and the amount of money spent on hair products is crazy.

Hair also often says something about our character or allows us to fit into a specific culture, eg skin heads, punks, goths etc, it becomes part of our style. Growing up in the 1970’s saw some wild hair styles and colours.

People do make assumptions about people related to hair styles and colours, eg skinheads are thugs, blonde’s are stupid, goths are weird. As a child I always had short hair and my hair was black, most people assumed I was a boy. I did grow my hair a couple of times, but much prefer it short. As my hair started to go grey I spent time and money on covering it up. I always found having my hair coloured so draining, but felt I had to do it regardless of this. Thankfully I have now accepted the grey, I might not like it as much, but it means I have more energy and money for more important things. Appearances are important and we all want to look our best, but we should not be ashamed of something that is natural and or out of our control.

It’s not just a female thing either, male hair products has become big business too. Many men are ashamed of going bald and or grey, especially if they are still relatively young. In the area where I live we have so many barbers shops and there always seems to be another one opening.

Why do we get so ashamed of how we look? As a wheelchair user and hearing aid wearer I am really bad for it. When I first had hearing aids I grew my hair over my ears to cover them, when actually it’s much more practical to have it cut around my ears. What is there to be ashamed of, I can’t hear without them and a lot of people don’t even notice that I am wearing them. People used to be very ashamed of needing glasses, now they are almost a fashion accessory. I only wear glasses for reading and it’s such a pain having to take them on and off all the time and I can never remember where I put them, but glasses now seem much more acceptable than other corrective aids. I hate people knowing I wear hearing aids and even with them my hearing is not great and I spend much of my time either avoiding contact with people or coming across a stupid rather than explaining that I cannot hear. I wonder if people with guide dogs feel ashamed, I do hope not.

None of us are very good at accepting things that make us stand out as being different. I use a wheelchair outside of the house and I hate the way people treat me because of it, I am not a lesser person and without it I wouldn’t be able to leave the house. I hate that I am reliant on someone to push me and feel sorry for my daughter and husband and often avoid going to things if it will make it awkward for them. I think perhaps some of the shame comes from feeling that I am not justified in using it, I am not paralysed, I just can’t walk far. I do feel like a fraud when I get out of my chair to do something or use a blue badge parking bay, even though I have a blue badge.

As someone who has an illness that imposes a lot of limitations on me, I still feel so ashamed that I don’t work and I don’t do much cooking or cleaning. I hate asking for help and am ashamed that people have to do the daily chores for me. It makes me feel a lesser person and an unworthy person. I can’t accept that it is not my fault, I always feel it is my fault and I should try harder and do more so then this piles upon my physical limitations and adds to the exhaustion and means I can do even less. I always think that people think I am lazy and spoilt because I don’t work. I also feel that if I had another sort of illness it would be more justified, but with ME, you feel so ill, but nothing much shows up medically so you feel such a fraud. I often wonder how I can feel so unwell and have so little energy when apparently there is nothing wrong with me.

I am currently feeling so useless as I am supposed to be making stuff for a hedgehog recue charity to sell, but I never manage much and other people are so productive, it puts me to shame. The lady who runs the rescue is badly sight impaired and has multiple health issues, she is also foster Mum to disabled children and she work relentlessly. I do want to be able to help so much more and am ashamed of how little I get done.

We all put so much pressure on ourselves to keep up appearances and to appear normal. What is normal anyway?

Tuesday, January 31, 2023

New Year Resolutions pt1 Exercise

 Well it’s that time of year again where we all think this will be the year we make changes and get more out off life and become happy. In reality, not much changes and by the end of the year we feel bad for not having achieved anything that feels worthwhile.

Apparently the top 10 New Year resolutions are ;

  1. Exercise more
  2. Lose weight
  3. Get organized
  4. Learn a new skill or hobby 
  5. Live life to the fullest
  6. Save more money / spend less money
  7. Quit smoking
  8. Spend more time with family and friends
  9. Travel more
  10. Read more

I would like to do most these too, except for losing weight and quitting smoking, they are all big things, but we believe that they will make us more happy. Many people will have already given up, or like me won’t even have started yet as life gets in the way and most of the things we want are too vague and we feel overwhelmed by it or just realise it is not realistic. Then of course we get annoyed and feel like we have failed.

I have decided to write a post about each resolution, I would love to say I will do one a day, but know that is far beyond me, one a week would take us to the end of March!! So will just have to see how it goes and how much I ramble on or get distracted by other things.

I always find this time of year hard and would love to be able to do so much. I always feel that I haven’t achieved anything and am in the same place I was a year ago, only change is I am a year older!!


No.1 Exercise more

I would love to, but I have a condition that limits my ability to exercise and pushing myself makes it worse. I use a wheelchair out of the house and have a blue badge. So why do I think I need to do more exercise? I feel guilty that I can’t walk and join in things and that someone has to push me in my wheelchair. I feel bad that I can’t do things like taking my daughter swimming or to other sport and leisure activates. I feel that because I can’t do much it means that the rest of the family don’t get enough exercise and when we do go out it has to be wheelchair friendly so not much fun really. I always feel that I am holding everyone else back. Most Drs I see tell me I should do more exercise, but they don’t see the consequences or have to live with them. Whilst I have got used to being in a wheelchair it doesn’t mean I like it or enjoy it. Comments like you are lucky you can sit down etc make me mad, but of course you have to agree and laugh! Being in a wheelchair is isolating, the person you are with is behind you all the time, you only get a view of people’s bums and elbows. You get to go at the pace of the person pushing you and only get to see what they want to see or miss things altogether as you get left to wait or get pushed past whatever it is so the person pushing you can see it. You get plenty of dirty looks for parking in disabled spaces, even when you get the wheelchair out and if you dare to walk you are the devil himself. Getting out in the fresh air isn’t easy as the ground needs to be relatively smooth and flat. Living at the top of a hill means we don’t get far before it gets too difficult for the person pushing. We tried doing hills when on Holiday in Austria, but it nearly killed my husband and damaged my wheelchair and it’s very uncomfortable for me. I do have a mobility scooter, but don’t use it a lot as I forget to charge it, can’t use it in the rain or cold weather and again the ground need to be quite even and you have to know where all the drop kerbs are. I do want to use it more and get out for some fresh air on my own, but limited to where I can use it locally.

To get a blue badge you have to receive certain benefits and then have to apply to the council. My Blue badge expires in March and you have to renew 3 months in advance. I am unable to renew mine as I have an expired PIP award. I am still being paid PIP as my award in under review, but reviews have been delayed. I submitted my paperwork in April, when then told me I had just 3 weeks to send in everything they wanted. I got a text before Christmas to say they haven’t looked at my claim yet. Whilst it is under review I get paid but have no award end date which I need for Blue Badge. Blue badge say I need an extension letter from PIP. PIP say I have an extension to February, but of course that is no good for Blue Badge as my current badge is valid until March. Standard Blue Badges are awarded for 3 years at a time, but they will only award temporary ones for the extension period. PIP say I will get a year extension in February, but I need evidence for Blue Badge which I don’t have so have to wait and see if it get sent. If I lose my Blue Badge it means I will no longer be able to go out on my own, not that I do much, but will mean I can’t even collect my own prescription or attend a Drs appt. Even though I don’t need to be able to park close when someone is with me, we do need level access and room to get wheelchair out of car, which is not always possible in standard spaces. The disapproving glares would stop though!

I talk to several other people with illnesses worse than I have and they are able to do much more than me, so I feel lazy and pathetic and that I should be able to do much more. I shouldn’t compare to others but I do.

Before I was ill I walked everywhere, only used car occasionally, now I can’t get to the end of the street without it! I have always had jobs that meant a lot of moving about, nursing, working with children etc, I’ve never had a sedentary job. I have never been a sporty person, but did enjoy swimming. As my daughter was growing up I was so sad that I could take her for a walk or swimming and stuff or even walk her to school except on my scooter.

I feel very isolated and hate being dependant on others to leave the house. I can’t even drive that far so again that limits what I can do.

So having said all this what can I do? Obviously walking is not an option, nor is asking people to take me to places so I need to be more independent within what I can do. I need to use my scooter more and just get out in the fresh air and do a ew of the errands myself so I am not always asking someone else. It is a bit of a hassle getting scooter out as it is kept in the garage and I have to move the car to get it out of the drive, but it should not be an excuse. I need to make sure scooter is charged up all the time too, so I can use it when I fancy and not have to plan ahead to make sure I plug it in. I can’t use the scooter in the rain so that is a limit as is the cold weather as I get so cold it becomes painful.


Wednesday, June 29, 2016

What a month!

June should be my happy month as it is my birthday and wedding anniversary, but it is rarely something to enjoy.

Being ill for so long each anniversary and passing year marks another with no improvement in my health and no improvement in the attitudes of those around or and real progress towards proper diagnosis or treatment for those with ME.

Deciding if and how to celebrate is always difficult as there will be payback for any effort, but at the same time I get fed up of sitting at home all day every day in the same old routine and long for something different just for one day.

This year my Dad was admitted to hospital the week before my birthday so that added to the stress and resulted in extra trips to see family and provide support.  I managed to get to my birthday, but in the two weeks that have followed I have spent most days in bed whilst my daughter is at school and have struggled a lot in the time I have been out of bed.

None of this was helped by me needing a fast track appointment for a Gastroscopy and Colonoscopy, due to being anaemic and the Dr thinking I had a GI bleed.  Appointments were only available at weekends which meant I also needed to sort out childcare.  This led to Emily being very distressed. Dealing with a distressed child is not easy when recovering from the procedure and having ME.

My gastroscopy and colonoscopy showed no bleeds which is what they were looking for. The Gastroscopy showed hiatus hernia and bile reflux which explains why I get so much indigestion. The Colonoscopy was "unremarkable", which is good news, but sounds a bit pathetic! But also good to know that there are no ill effects from 30 years of IBS. They took some biopsies to check for Coeliac. I can now start on iron tablets, but still no explanation for the Anaemia. I have not got the iron tablets yet as the Drs take so long to sort out prescriptions and I have to wait until July 7th to see the GP to see what happens next.  The Dr knows that the iron deficiency is not due to a poor intake and is being lost somehow hence the tests as the gut is the most likely place. It's probably an ME thing as our bodies don't function in the normal way.

Even though the procedures were supposed to be under sedation I was wide awake and watched it all, which is quite interesting, but might not have been if there was something wrong.  I was supposed to feel drowsy afterwards, but instead got an adrenaline reaction and couldn't settle because of  palpitations.  Things finally started to calm down over 24 hours later.  I had to be supervised for 24 hours so started to feel the worst once I was on my own, typical.

Can you believe that on Saturday when I couldn't have anything to eat I ended up playing cafes with Emily and then watching Masterchef with Rob, that should be classed as torture!

Now that I am able to eat normally again I am on the look out for recommended Gluten free recipes or food.  Has anyone got any gluten free meals they can recommend. Our repertoire is quite limited, usually by time rather than ideas. I have lots of recipes and ideas but so many turn out horrid. Want something tried, tested and yummy, but not spicy. I know I am hard to please!

It is less than two weeks since my birthday and it seems a distant memory.  I did manage to got to the cinema and out for a meal as I was determined, but it wasn't easy and the meal was disappointing. The film You Before ME was great, but made me cry, even though I knew the story and told myself  I wasn't going to cry.  

Reaching the age of 45 makes me feel so old and also makes me feel that I have done nothing with my life and that it's too late now.  I feel like I should have achieved things by now not just being ill for nearly 20 years.  My birthday is also my wedding anniversary, 15 years, my husband has never known me well, but I used to be better than I am now.  It was also 10 years since I found out I was pregnant with Emily.  She has never known a well Mum and is growing up fast and I am so sad about the way it affects her.  I feel that she carries a big burden for her age and she is getting more and more anxious.  I feel so bad that I can't make her happy and that she has to live with my limitations too.

I was upset by someone who posted on Facebook that people who don't work are so lucky.  People who don't work have no money and independence, no identity or sense of satisfaction, are shown no respect and feel completely worthless unless it is their choice not to work.

The week after my birthday came the EU referendum, which seems to have brought out the worst in people and there is a lot of bad feeling and abuse on social media and being reported in the news.  It is so sad that people can't get on.  It is also sad that we now have to live with a lot of uncertainty whilst the political arguments go on and people make decisions that affect our lives and the future of our children.  The strength of feeling from both sides of the argument has been quite overwhelming and has upset a lot of people.  It is going to go on for a long time and we will feel the effects for many years whatever happens.  At the moment we have a Union Jack flying outside the house in support of the UK teams in the Euro 16 football, I keep thinking I should take it in as I don't want to be thought racist, but I want to show my support for the teams, only Wales left now.

I think we all need to adopt a Pooh Bear attitude 
(facebook)
But even this got sadly changed to reflect what is really going on
(Guardian UK)

I think we will all be glad to see the back of June and hoping that July will bring some sun and cheer, it's currently cold and wet.  In my experience June is never flaming except in the expletive use of the phrase.


Wednesday, May 25, 2016

Millions Missing

Today marks #ME Action's, Millions Missing Campaign.  This is a worldwide day of protest for those with ME/CFS.

"On May 25th, 2016 #MEAction is global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief." (#ME Action).

"#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease.  At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness." (#ME Action)

Events are taking place in Washington, DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne, Ottawa (virtual) and online.

The UK protest is taking place at Richmond House in London.  Richmond House is where the main Department of Health is located.  Empty shoes are going to be placed to represent the millions of people who are missing out on a life because of ME.

I have been too worn out to find and send a pair of shoes for the protest, so have taken this picture to mark the occasion 
These are my slippers the shoes I wear the most, missing out on real life and real shoes. ‪#‎MissingMillions

People are also being asked what they are missing because of the ME/CFS‬.

  • I am missing nearly 20 years of normal life.
  • I am missing out on being a normal Mum, wife, daughter etc (I have never been a well Mum or Wife)
  • I am missing out on being able to work and earn my own money
  • I am missing being independent and doing things for myself and my family.
  • I am missing being able to walk
  • I am missing being able to use public transport and travel
  • I am missing being able to look after my own house and have things the way I like.
  • I am missing being able to use my brain and use the qualifications I worked hard for.
  • I miss being having  a whole day to be able to do things (rest times are essential)
  • I miss not being able to drive when and where I want to.
  • I miss being able to cook and bake.
  • I miss nice normal food (due to food intolerances)
  • I miss being able to read a book and know what is happening.
  • I miss being able to watch TV and take in the programme.
  • I miss being able to care for people and help people.
  • I miss my energy, my stamina
  • I miss being able to have fun
  • I miss happiness, joy and laughter
  • I miss my concentration and understanding
  • I miss the outside world ( I can get out, but it's very limited and has to be for essentials like the school run and appointments)
  • I miss my health, I can't remember what a day without symptoms feels like
The list could go on much more, but it's long enough and I hope gives some idea of what people with ME miss out on.  Every ones list would be different as symptoms and abilities vary so much.  The one thing we are all missing out on is an understanding of the condition and effective treatments.  So much is understood about other conditions and treatments are amazing.  ME/CFS  feels like it is forgotten and ignored.  It's just not a high priority as it is not normally life threatening or widespread enough to warrant attention.  

Thursday, May 05, 2016

Overwhelmed again.

I am feeling totally over whelmed at the moment.


I had to be rescued by RAC yesterday.  The driver seatbelt has been jamming for a while.  Rob rang dealer who said they couldn't look at it until end of May and to ring RAC if stuck.  Yesterday it got stuck in school car park so I was unable to drive.  A lovely RAC man came to my rescue and got us home and has taken car.  No idea when it will be fixed.  VW can't get us a courtesy car, but RAC got us one last night.  It was difficult to organise the help as I can't use phone, so messaging back and forward to Rob who was at work.  Then the RAC man got the belt moving and wanted me to drive 10 miles to dealer!  My limit is much less than that and when I know where I am going and without a panicking child in the car too.  So then I had to ring Rob who arranged that could just drive home and then the car would be towed.  It was then manic when Rob got in trying to sort out the courtesy car, but the RAC were very efficient.  I was left with a car I haven't driven before and that is bigger than I am used to, whilst feeling awful to get Emily to school this morning.  To be fair I was offered help, but wanted to keep as normal as possible for Emily.

As soon as I got back from taking her to school my phone started ringing about the car, but I couldn't speak to them so asked them to ring my husband if they needed to speak to us.  I was also sent a video message of my car on a ramp saying we have checked you vehicle.  When Rob spoke to them they said they hadn't looked at it and didn't know when they would.  It all got too much for me.  I get so overwhelmed and having to deal with unexpected things really knocks me out.  I have been trying to rest all day, but so unsettled.  Only consolation is that Emily has gone out with a friend straight from school, so I can sit quiet for a bit longer.

Emily is very unsettled about residential next week and bedtimes are hard work.  Her hamster is very sick too, it's not eaten or drunk for 2 weeks and has gone blind, the timing is not good.  The hamster was her birthday present and is only around 6 months old.  I feel really sorry for her everything she has contact with seems to be sick or old.  She gets very upset about my Dad's condition and we have a cat who is 17 and going strong, but we are always asking her to leave him alone.  On top of having a Mum with ME and a Dad who is on life saving medication following cancer, its not surprising that she also gets overwhelmed.  She said to me last night that I was special because I was different, but it is unusual for her to think like that.  In some ways I think her understanding is getting a bit better and she will try to be helpful, but she also gets really frustrated and wants me to do things that I can't.  It must be hard seeing me struggle to deal with seemingly trivial issues and she offered to speak on the phone when we were trying to sort the car as she knows I can't, but she was also panicking as she knew we were in a difficult situation.  It didn't bother me too much as I knew we were safe and not stranded on a road or anything, but the stress of managing the situation was hard.  I did have to laugh though when Emily asked me if it was the RAF we were waiting for!

I had some blood tests and an ECG a couple of weeks ago and I get results next week.  I don't know what results are but they rang me to say I needed a double appointment and then gave me an appointment 3 weeks later.  I have to go next Friday straight from collecting Emily after the trip so the timing is not good, but at least Rob will be there with Emily.  I have no idea what it is they want to see me about, but assume it is not urgent.  The tests were to investigate my dizziness and palpitations which have got worse.  They could be worse as I increased my Amitriptyline at the end of last year to help with pain and sleep.  When I went for my medication review in March I was asked to stop my anti inflammatory painkillers as I have stomach problems.  The daily indegestion has now stopped, I was getting it despite taking a high dose of Omeprazole.  Stopping the anti inflammatories meant I was left with little for pain control only Paracetamol and Cocodamol.  Cocodamol also makes me dizzy, constipated and headachy, so left with trying to take as little as possible and try other ways to manage the pain.  In the last few weeks my pain has not been unbearable, but I think that is because of the adrenaline that is making me so restless.

I was told about a device called Alpha Stim that has helped a friend with her ME, anxiety, depression and pain.  I was very sceptical and the device is very expensive, but a drug free treatment was tempting.  Rob did some research and spoke to the friend and decided we should get one as there is a 60 day trial period.  Using it seems to be making me feel more sick and dizzy, but it's difficult to tell as I am stressed with other issues.  I am trying to get some advice from the company who are quite helpful.  I also think though the stress of wanting it to work and worrying about the cost of it is having an effect.  The friend says she feels calm when using hers, but I don't find it relaxing, except that I use it when lying down.  I wasn't hoping for miracles, but didn't expect to feel worse and hoped that it might just take the edge off some symptoms.  I was wary about trying, but I take medication and don't worry about that.  And thinking about he cost too, I spend £104 a year on a prepayment certificate for my medication, then £32 a month on Physio to help with pain.  I also have a wheelchair, a mobility scooter and hearing aids so the costs mount up so the device seemed a bit less extreme..  I really don't know if I should keep trying in the hope things will settle down a bit or whether I am making things worse. and I need to make the decision before the 60 day deadline, which is still a while off, but I feel under pressure, which of course doesn't help.

In my calmer moments I have been trying to get into things for ME awareness, see my post http://poohbear71.blogspot.co.uk/2016/05/undies-on-outside.html.  I have also made a few ME themed things






I am trying to make a few in return for donations to ME charities, it gives me something to focus on and enjoy, but can also become stressful as I don't like to let people down or keep them waiting and I can only do them when I am on my own and not having to deal with other things.

Against my better judgement I also signed up for a Play Therapy course.  It is all online and course work isn't compulsory, but of course I want to do it.  I decided to do it as it is something I had an interest in before I was ill and also thought it might be helpful with some of Emily's issues.  So far I have read first module and answered some multi choice questions, but I had to keep going back through text to find answers as I can't remember what I have read.  Then there some questions to answer in your own words, I gave up at that point, that will take a lot more effort.  There are 9 modules. In just over a month I have done a tiny bit of it.  I am so upset and frustrated as it feels I can't stick at or manage anything.  The temptation is to keep trying things in the hope that I will find something I can do or something that helps my condition, but I always end up feeling worse and being unable to cope with my daily routine.

When I do manage to do something it seems to take all my energy and I struggle with things that should be so simple or get myself in such a mess trying to work something out and it ends up taking me hours to do five minute tasks.

I really need to take note of this sent to me by my Uncle this week.






Sunday, May 01, 2016

May - ME Awareness month

Myalgic Encephalomyelitis (M.E.) is a disabling and chronic illness, devastating the lives of 250,000 people in the UK. May is ME awareness month, with the main day being May 12th. Help us raise awareness and raise funds for ME research.
I have had ME for nearly 20 years and there is still no know diagnosis or cure. My husband and daughter have never known me well and I hate the effect it has on us all every single day. I am not as badly affected as many, but still lead a very limited life. I am not able to work or care properly for my family and every day breaks my heart.
Please show your support by making a donation and or finding out a little bit about ME and how it affects sufferers. The government is currently reassessing disability payments and benefits and many of us will lose what little we get and other benefits such as mobility cars and blue badges because our illness is not visible enough or it is thought to be psychological or fake.
Believe me I wouldn't chose to live like this and make life so difficult for myself and those I love. It's a cruel and unforgiving illness.
Thank you for reading, please share if you can.
My justgiving page is https://www.justgiving.com/Jane-Shaw5
Other events are taking place online;
Information about ME can be found at;
Wikipedia

I am not actively fundraising this year as it was very hard work and there are only so many times you can ask people to donate.  But if anyone wants me to make cards or jewellery I will ask them for a donation to an ME charity.

I have made these for ME awareness





These are available and I can make same or similar check out my April Makes or other makes posts for other examples of what I make.









Sunday, February 28, 2016

Question Time - Question 4

Question 4

"How do you decide where to go on holiday?

We always tend to go somewhere max of 3 hours away as I find the travelling hard, hubby doesn't like long drives and Emily hates being in the car. Before we had Emily we used to go on peaceful Lakes and Mountain holidays, but airports are a nightmare and would be even harder with Emily, she hates crowds and would be anxious about the plane and of course once you are on there is no going back. 


For a few years we have done caravan holidays where they have facilities and entertainment, but I miss out on most of it. Last year we did a coach trip to London which was hard work especially as Rob got ill, but we managed it has there was no driving for him. 


We would like to go to Manor House craft and activity hotel which sounds great, but is too far away. Plus points it is full board and has lots of activities. Negatives it is too far even if we break journey there and back and I would end up doing too many things. 


We also wanted to try Euro Disney but same things apply really and none of us have passports so would have to add them to the cost. Summer holiday prices are bad enough as it is. 


We thought about a cottage but then we have to sort out food and activities and keep Emily entertained so its much like being at home. 


Being away is hard as we have no help, but we also don't fancy going with other people as then we don't get to do family stuff and I would get left out completely."


The attraction of somewhere abroad keeps popping up with all the adverts on TV and after we got a postcard from a friend who has just been to Austria. We had a holiday in Austria at Christmas in 2005, seems forever ago.


Holidays for the last few years have been so difficult and we have been so stressed and worn out before we even set off that they have not been good experiences.  If we had some one to make all the arrangements and do the packing we would be in a better position to enjoy the holiday itself.  The travelling is difficult, but you can't just arrive in a place without the effort of getting there.


Our main issues are not really ME related though, as I use my wheelchair and can be pushed around however I feel.  The main issue is the problems that Rob has if he gets over tired or over stressed or if he gets a vomiting bug, then we are really stuck as I am unable to walk or drive and Rob would need hospital admission, due to issues with the medication he takes since having his Pituitary removed due to cancer.


Rob did an internet search on ME friendly holidays and it suggested a cruise.  I like the idea of a relaxed cruise not one that is formal and stuffy, but worry about how child friendly they would be. There are very few that start in the country and most that do go from Southampton, which is too far from us.  Most cruises require flying too, but airports are such hard work.  They are huge places and Rob can;t push me, manage the luggage and keep hold of Emily.  The only assistance available is after check in when you have got rid of your luggage.  Train travel is also a nightmare as booked help often doesn't turn up and boarding and exiting train is very difficult if it is not an terminating station.  I can get out of my wheelchair and get on and off the train, but it leaves Rob with luggage and my wheelchair trying to get on and off through crowds of people who just get in the way.


The coach trip we did last year was better in that Rob didn't have any driving and that the luggage is on the coach and out of the way most of the time and the drivers are usually quite helpful with getting wheelchair on and off. But the schedules are usually very structured and hectic and you have to adhere to them or get left behind.  Coach travel is usually quite long and uncomfortable and I get very dizzy for weeks after from the motion.  Rob usually passes his time by sleeping or playing on his phone, but I can't do that and one of us has to entertain Emily who usually just wants to know how long we will be before getting wherever we are going.


Eating away from home can be a nightmare, with so many intolerances.  Some places are quite helpful, but in most places I just have to miss out the bits I can't have.  Being intolerant to gluten, dairy, refined sugar and fish often means I don't get much of a meal and especially when I am struggling to cope anyway this is not good for me.


So as we move into March we still have no idea what to do.  It would be easier not to go anywhere, but we do need to get a break from our daily routine and in my case the same four walls I see all day every day.  I rarely get out other than to do school run and to visit my parents.  We also feel like we have nothing to look forward to.


We still have a very idyllic view of holidays despite so absolute disasters, but those experiences are also making us too scared to take a chance on the things we really want to do.  We are also put off by the prices of holidays during school holidays as we don't want to pay out huge amounts of money for something that is miserable and hard work.


None of us cope well with the heat so foreign holidays in August are not really an option, but there is not really enough time in the other school holidays.  Holidays in this country are often spoiled by the weather and whilst I don't mind a bit of rain or a cooler temperature it can be difficult to find things to do or to enjoy the surroundings.


Other people seem to have loads of holidays and great experiences and make us feel like we are missing something or doing the wrong things.


We love watching Death in Paradise, the scenery and life style looks so perfect, but in reality it would be too hot and too far to travel, not to mention very expensive.  It is filmed in Guadeloupe.  I think that a murder during the holiday might also spoil it quite a bit, but good old Humphrey would sort it out, he'd probably be really good with Emily too!!






Wednesday, February 24, 2016

Question Time- Question 1

I have been asking a few questions on some of the ME forums I belong to and have got some interesting answers and advice.

Question 1
Anyone else find it hard to read and understand and take in written information? I have been trying to read stuff about behaviour issues and other such things and it just doesn't seem to go in. I have a Masters degree and spent many years studying and researching so this shouldn't be hard. I like reading and read novels which I enjoy at the time, but can't remember much about it once I have finished. I find it really hard to follow recipes, written instructions and patterns and get really stressed with them, so fed up of what this illness robs us of.

I am finding it hard to read information, I have been trying to research behavioural issues that Emily displays and also things to try and improve my own mood, but I don't seem to take in the information.  I do read novels, but can't really remember what I have read and can't read anything that is too complicated.  I struggle to follow recipes and patterns which makes my pleasurable activities difficult.  If we have a new game to play I have to ask someone else to read the rules and then try and explain them to me.  Emily likes to change rules once she is used to the game, which is quite creative, but confuses me too much. I have a post graduate degree so was always used to reading and gathering information so I find this quite distressing.  When people have sent me information they think that I am not taking it seriously as I don't always read it, or if I do I can understand what it is telling me to do.  At the moment I am trying to work through a book with Emily What to do when your temper flares.  It is a book aimed at children and I am just about keeping up.  I have also been trying to read Wisdom of groundhog day, which does seem a good book, but I have only got half way and now it feels to much of a chore to carry on with it.  Finally I got 80% of way through Words that work, again an interesting book, but I can't remember the techniques and as it is usually a stressful situation when they are needed my mind goes blank.

If I am trying to follow a recipe or pattern I really struggle, partly because I am trying to multi task by reading the instructions and doing the activity, so many of things I try become too stressful when they should be a pleasure and I get really upset at not being able to do something that is really quite simple.

Some people suggested audio books, but with my hearing issues listening is very hard work and I only hear parts of speech.  I use subtitles when watching TV and can't watch anything that doesn't have subtitles and even then if there is too much going on I can;t follow the programme.  It is frustrating as these things are what most people do to relax.

As I now know many fellow sufferers have issues with reading, I will try and make my posts a reasonable length so will post the other question separately.



Thursday, February 11, 2016

Meet Christine

Christine is a fellow ME sufferer who enjoys crafts


What is your craft?

I have done many crafts; drawing, painting, beading, sewing, knitting, making miniatures,  shell craft, and so on. Basketry too in the past. Pergamano parchment craft which I used to enjoy a great deal.

How did you get started and when? 

I have always done crafting, since my teens. 

Do you have a business name?  What is it and how did you choose it? 

No, although when I was selling jewellery at craft fairs I used to label them “Handmade by hochiwich”. Hochiwich is a name I use sometimes as an alias, it means hedgehog, in the Romany language, and it felt appropriate. I am less prickly now :)

What is your favourite part of your craft? 

Being creative.

What is your least favourite part? 

Pain in my hands and exhaustion from concentration :) 

Do you have a favourite thing that you make?  Do you have a picture of it? 

I don’t have a favourite. But I have many pictures. My current hobby or craft is making peg dolls to a high standard. 




Do you have a website or Facebook page?  If so what is the URL? 

I don’t have a website of my crafts, only one for some of my poetry. As I’m not selling my wares it doesn't seem worth paying for a webpage. 

Do you sell your makes?  If so, how and where? 

I no longer sell my work. Being housebound to a large degree makes it difficult. Also being on benefits makes it complicated and I work too slowly now to make it worthwhile. 

What is your favourite craft product? 

Again, no real favourites. What I use depends on the current craft. 

What is your favourite craft supplier? 

Currently I use eBay quite a lot. 

Personal Details

Name Christine Stromberg
Age 71
Location Sheffield, South Yorkshire