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Oh I Do Like to Be Beside the Seaside! But It’s Hard Work
Summer holidays have started and most people are going away, looking forward to travelling and seeing new places and either relaxing or having new adventures. For people with ME/CFS (and other conditions I am sure), it’s a difficult and for many impossible.
I like going to places and seeing something different. Choosing a holiday for us has to take into account my condition, Rob’s medical needs and the needs of an 11 year old, none of which are very compatible!!
A few weeks ago I went to Scarborough for a respite break, but ended up quite badly scalding my leg! Travelling on my own is very difficult even though Rob drops me at the train ( I can’t walk to platform) in Leeds and then in Scarborough I don’t have far to walk for a taxi, it was exhausting. I didn’t get to see the sea as it’s a 10 min walk from hotel and when I looked at getting taxi there weren’t any available. it does seem a bit of a waste of a trip away, but there are no chores and I get all my meals. Helen who owns the hotel had broken her wrist a couple of weeks before, and was still able to do more than me, including sorting me out after scalding my leg. I did begin to wonder if I was meant to be able to have a break without something going wrong.
Last year was the first year we went abroad since having Emily. After so much agonising over whether we could manage it with my health, Rob’s and and Emily we bit the bullet and booked to go to Euro Disney. My Dad died in the early hours before we left so it was a very difficult holiday, but not for the reasons we expected. It wasn’t a good start to holidaying abroad and added to our feeling that holidays are fated. We did manage a break in Cyprus staying with family, Emily’s first time on a plane! Having managed this we decided that we would try again to do something this year. We spent weeks trying to decide where to go as we wanted local flights, short transfers, reasonable flight times and somewhere not too hot and not too busy. We wanted to do Lakes and Mountains, but nothing met our criteria. We looked at Switzerland, Austria and Italy. It was very disheartening. We were thinking of giving up, but then did a random search and found a compromise, just hope we have got it right.
Once booked of course there is then finding travel insurance. ME doesn’t seem to be an issue, but someone who has had cancer is more difficult even if it is nearly 12 years ago. As we are travelling in the EU medical issues shouldn’t be a problem, but with Brexit looming we don’t know what will happen in the future and we are unsure if we would be able to get cover further afield, but that is currently way out of our comfort zone anyway.
As a child we didn’t have a holiday every year, but when we did, it was an adventure, so I am not used to sitting on a beach or round a pool for a week. I like to see the sights, but with very limited energy and in a wheelchair this is not easy or perhaps the best thing to do, but if I have got there I am going to make the most of it even if I do feel dreadful, but it’s not always possible and there are days when I can’t, which seems such a waste especially when only away for a week.
Eating is very stressful too having several food intolerances that make me very ill and not knowing what is safe or not. I often end up eating salad and fruit, which is fine if it is hot, but not very calorific and energy boosting. Add into the equation Rob has to make sure he doesn’t get a stomach upset or he will be hospitalised and a fussy 11 year old, it’s a nightmare before we even get there.
Last year I managed to forget my essential medication. I spend that much time making sure Rob has his as it is time critical and dangerous if he doesn’t have it that I forget my own stuff. Thankfully we managed to get what I needed as it is available over the counter in Cyprus, it would have been a different story if we had to contact the Drs to arrange it. But it’s not how you want to spend the first day of your holiday. I had also forgotten Emily’s allergy medication so had to get that too, but then couldn’t read the dosage instructions, aggghhhh. Anyway I managed not to overdose her. This year I have my medication packed well in advance! I have to pack in advance so I am not rushing around too close to going away, but it’s still too stressful and I wonder why we are doing it. I need someone to pack for me, but they need to know exactly what I need so it’s easier to do it myself and travelling with a husband and child means I have to make sure they have what they need too. It takes ages to pack even though we don’t need a great deal.
I feel guilty for complaining as I am lucky to be able to go away at all, but it’s not relaxing and fun, but it is good to get a change of scenery and to be away from household chores. Being away for a week is all we can manage, but it’s takes time to recover from travelling there and back, so it’s a permanent struggle and we have often thought that it might be better if we didn’t go anywhere. We have booked a room with a balcony so I hope it has a good view, knowing my luck it will overlook the bins!! There is a pool which should keep Emily happy, but she always wants someone in with her and or want us to watch what she is doing constantly. Before we had Emily, Rob and I were happy to saunter around or read, but there is no chance now.
Now I am wondering if it is fair to send a postcard to someone who is too ill to go away, is it a nice thing to do, or just being cruel? Why is everything a dilemma? And of course sending postcards is another chore!
There are so many places I would love to go and I know everyone has dreams, but I feel that I would be able to do some of them if it weren’t for being ill and having to take everyone’s needs into account. People tell me we should go on a cruise as it is easy, but to me it sounds like a nightmare. I love boats and would love a cruise and these days you can get child friendly ones and wheelchair friendly ones. I’d love to do Norweign Fjords or go to St Petersburg or an Alaskan cruise. The main issue for us apart from price is that we need to be near a hospital as if Rob gets a stomach bug he needs to have his medication IV in hospital. You hear a lot of stories of cruise ships where most of the passengers get stomach bugs, which is miserable, but for us it would mean Rob would have to be taken off the ship and I am sure that no one would insure us for that.
Every time I watch Poldark I want to visit Cornwall, I went several times as a child. Again we can’t do this as we only have Rob to drive and he doesn’t like long distance driving and it’s not fair to him to be the only driver and again if he got ill we would be stranded. We thought about going by train, but to be able to get around when we were there we would need to hire a car which just makes the price ridiculous.
I could ramble on all day, but perhaps I better stop and be grateful for what we are doing and try to enjoy it and not be too stressed before we even go as that is not going to help.
What Can I Do?
What can you do was a question asked on a facebook page the other day. I answered ” I am limited due to health problems and get so hung up on what I can’t do. It’s much better to focus on what I can do and be proud of what I acheieve, but I don’t think many of us are very good at that.”
I am rubbish at taking my own advice and always try to do things that I can’t or to push my limits because I hate the limits. I always focus on the thing I couldn’t get done or had to ask someone else to do, rather than the things I did (no matter how small) that I did manage to do. It’s so easy to dismiss something like reading a book as doing nothing, or putting a load of washing in as as an essential chore and therefore not really counting as doing anything. With ME any task is something and drains our resources. If I do something one day that pushes my limits then I can’t sleep, am in a lot of pain and can’t do anything the next day, it becomes a viscious circle and there are never any reserves for unexpected things.
With ME rest is crucial, but what if you can’t rest? This may sound crazy, but the more I have done, the less able I am to rest and or sleep and just feel awful and never know what to do for the best. There is only so long that you can lay trying to rest or sleep with heart pounding and brain racing. I am currently having problems with bladder spasms when I try to rest, so frequent trips to the toilet don’t help with rest. I am sure it is due to adrenaline, there is no sign of infection. I have a blood test to check it out tomorrow and then in the evening we have Emily’s primary school leaving party, so I have already done too much tomorrow before it has even happened!
How do you work out what you can do, what you want to do, what you need to do and what you should do?
It’s difficult to know what I can do each day and can vary hour by hour, so of course it’s impossible for anyone else to know. Or I might fancy doing something sand then find that I physically can’t or that I can’t forcus on it, by then of course I have done too much and it’s too late!
I like making things a you know, but often by the time I pick something up to do I am already worn out just from the daily activities I have done or I will wear myself out looking for something that I need. I can’t concentrate to do things when other people are around so the time I have is limited. Then take into account the mistakes I make and have to correct it becomes frustrating and tiring. My head is full of ideas, but many of them never make it any further!
I think I need to finish now I have done all I can!
P.S
This just landed in my inbox from The Mighty a site for people with disabilities and health problems.
“It’s easier to count up the things you can’t do than the things you can do, isn’t it? But here’s a more important truth: Your illness has also given you some pretty awesome qualities. Who else but a chronic warrior can amuse themselves in waiting rooms for hours? Or truly empathize with another person’s pain? Or give themselves injections and other medical treatments that might make others squeamish, without batting an eye? There may be some things you’re not quite as “good at” anymore, but there are some things you do better than many others around you, thanks to your chronic illness. We asked our Mighty community to share something people with chronic illnesses are awesome at because of their illness. The responses they shared are both funny and heartwarming, and speak to the strength of every single person who lives with chronic illness. You all rock.”
One More Step Along The World We Go
Well I survived my birthday, got some lovely presents and visited Kitty Cafe Leeds for tea and cake 🙂 There is an amazing selection of teas and lots of cute cats so that’s me sorted
We have been back again twice!! It’s not cheap as you have to pay per person per visit plus anything you eat or drink, but it’s relaxing and fun and keeps Emily occupied too and she was most put out when we went once without her!! I get on better with cats than people! I had to laugh at myself yesterday waiting for Emily to finish her sewing class a cat wandered past, I said “oh hello”, if it had been a person I wouldn’t have said anything!!!
A lot has happened in the 3 weeks since my birthday as emily was finishing Primary school and moving to High school, it’s been very hectic with so many leaving and new comers events. In our area of Leeds the children move to their new year in July and do a week or two transistion before the summer holiday. Its a great idea and saves a lot of worry during the summer holidays for kids and parents. Monday was Emily’s first day. We had to take her for 8.20 and then leave, she came home on the bus. I think she was most nervous about the bus, but coped well and was really excited when she came home and said she wanted to go back! It was great to see her so happy and able to put the worries of the move behind her. She had got to know a few people as there aren’t many children from her primary school, but she couldn’t remember the name of her form teacher!!
It’s the start of a new era for me too having finished with 7 years of school runs. I have to be up earlier in the morning to make sure Emily is off to school. School finishes earlier so I am on my own about the same amount of time, but don’t have to drive as she catches bus to and from school. It’s a change to my routine and has muddled me up so I am not resting well and feel pretty rubbish, but it’s also been a busy few weeks so will be nice when things settle down. Emily has several events so it will be after the holidays before I get into a new routine I think.
I don’t know what I will do with myself, I still have to be up and about in case a problem with buses. Emily is having to give up the only after school class I take her to as it clashes with school commitments. It will be a relief, but also sad. It was difficult for me to get her to class and then wait for her and drive home again. Sometimes Rob caught bus from work to meet us and drive home, but often the bus was missing so he had to go home instead. Unless the school buses are messed up or Emily has an after school event I won’t have any reason to go out, but I am sure things won’t be a quiet as I imagine, life usually keeps me on my toes. It is sad when the only time I go anywhere is to take Emily somewhere. I can’t take myself somewhere as I can’t drive there do something and drive back and I can’t walk so can only go places where I can park outside. I can’t drive more than a few miles, so it’s very limiting. The only times I get out are if we all go somewhere, but that’s usually only running errands at weekends and going to visit family.
I have lots of ideas for things I want to make, but I get very disillusioned as I have no way of selling them or any interest. I can’t make large amounts. I had a bit of stock which I sent to Emily’s school for their summer fair, but i was upset to see they were selling my cards and pictures for 50p and £1 on the Bric a Brac stall! They asked for seaside theme stuff for raffle and stall so I made a couple of pictues especially
I have no idea if they sold, I was hoping to get them back!
I have lots of things I want to do and things to finish, but I know in reality much of it will stay in my head and I will only make stuff for my own needs.
I have some other things to post about but will end this one before it becomes a long ramble.
20 years and counting!
What have you been doing for the last 20 years? Me I have been busy living with ME. Here is my latest rhyme.
20 years with M.E,
20 years since things went wrong.
20 years since I lost me,
20 years, it’s far too long.
20 years of missing out,
20 years of feeling ill.
20 years of such doubt,
20 years, going through the mill.
20 years is too long,
20 years how can it be?
20 years of feeling wrong,
20 years of hell for me
20 years in this mess,
20 years without a break.
20 years, wish it were less,
20 years for goodness sake!
20 years of feeling rough,
20 years running empty.
20 years, I’ve had enough
20 years, that’s more than plenty.
My daughter asked me the other day how long I have had M.E, so I said 20 years, she replied that means you got it when you were 26! Yep, seems like a lifetime and that’s the official time the real time is more like 33 years! It’s a long time to struggle and not know what life holds or what will happen next, not that anyone one does know what is around the corner. I know that I am far luckier than many who have more serious illnesses or have been cheated of life completely.
I’d love to be able to build a new life and make something of myself and do more with my family especially my daughter who we fought long and hard to have in our lives. I hate that my daughter suffers for it too and struggles with accepting it and understanding what it means for me and her.
I hope each day that the next 20 years will be better, but medical progress is slow and it’s unlikely.
Negative for Pain!
Back in September I purchased two Ionisers to use as Air Fresheners. After a couple of weeks I realised that my pain had been much better and I wasn’t taking as many pain killers. I didn’t think a huge amount of it as Emily has just gone back to school so my routine had settled down a bit, but the improvement remained, so I had a look online to see if I could find any evidence. I am not one for wacky treatments or claims, but I found some documented information, best summarised at http://www.losethebackpain.com/negative-ion-therapy/
“In 1959, Dr. Kornbleuh and his medical colleagues at Northeastern General Hospital treated a group of 138 burn victims with negative ionized air.
To their surprise, more than half of them suffered significantly less pain and discomfort. They also healed more quickly and thoroughly than those who were treated by conventional methods.
On the other hand, less than a quarter of the control burn victims experienced similar improvements in the same time frame. Later on, the hospital equipped all of its postoperative wards with negative ion generators.”
and
“Migraines happen when an overload of the chemical brain transmitter serotonin we spoke of earlier causes blood vessels in the brain to dilate. Blood flow increases and pain receptors in the blood vessels get stretched. This is what causes the excruciating pain in a migraine.
In numerous tests and studies, negative ion treatment prevented overproduction of serotonin and effectively cured migraines. And, of course, it has no negative side effects or risks found with migraine medications.”
There are other benefits mentioned in the information such as treatment for SAD, depression, infection, asthma, stress and fatigue.
Not really believing that it could be the Ioniser effect we decided to try a week without them on, after 2 days I put them back on as I couldn’t stand the pain I was in any longer and they have been on ever since. I have tried so many expensive treatments and to think that an outlay of on £23 was having such a noticeable effect is amazing. I am still in pain, but it’s not so bad and I don’t feel the need to take painkillers as much as I was before which has to be a good thing. I wish I could say it has had an effect on my other symptoms, but sadly not and I fear it may be making my Tinnitus worse, even though it is cited that Tinnitus can be improved too. In the grand scheme of ME it’s only a small thing, but easing of one symptom is better than nothing. I still needs daily painkillers, heatpads and monthly physio, but to have a bit of relief goes a long way, the downside is that I often try to do more as my pain is not preventing me as much and therefore overdo it and make my other symptoms worse.
Some of the information says that you don’t need them on all the time to have the effect, so maybe I need to switch them off some of the time and see what happens.
When we first got the Ionisers we were sensitive to the smell they generate, can only describe it as really fresh air, which makes sense from this description;
“Negative ions generally appear in natural settings in greater numbers than positive ions. For instance, negative ions are generated by moving water – rivers, waterfalls, crashing waves, even showers and fountains – and the presence of negative ions is actually used to identify potential sources of water on other planetary bodies, like Enceladus and Titan. Waterfalls are probably the greatest producers of negative ions, thanks to the violence with which falling water breaks apart on both hard and aqueous surfaces. Plants also produce negative ions, especially when exposed to intense light during photosynthesis.” (http://www.marksdailyapple.com/negative-ions-health/)
We are no longer aware of the smell.
I hope that this is off some interest to people and that some may feel it worth a try. Like all things I am sure that it won’t work for everyone, I have tried so many things and was surprised that something I was not trying as a treatment had an effect.
Daily Living with ME pt7
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;
Controlling Temperature
I am always cold even on nice warm days. I wear warm clothes all year round. I have an electric blanket for my bed and when I rest I always have a heat pad partly for pain and partly for warmth. The only thing that warms me up is a hot bath if I am fully in the water, but that’s not always possible.
My feet are always cold and my hands usually are too. My feet can get so cold that I can’t feel them. A few weeks ago my feet got wet in pouring rain and I didn’t know they were wet.
If I go out in my wheelchair I get very cold, very quickly even dressed up and with a blanket. Being out and getting so cold causes me a lot of pain.
Despite being cold I often get night sweats (had them for years so nothing to do with my age) and end up needing to change pyjamas and sometimes the bed as being sweaty then makes me really cold!
Warm food can help to warm me up, but it’s more like a hot flush and then I cool off again.
Daily Living with ME pt6
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;
Washing and Dressing
Most of the time I am able to have a basic wash and dress myself or wait until I feel strong enough. Sometimes I need help to get undressed and into bed, which Emily or Rob will help me with.
I need supervision for a bath and have bath rails to get in and out, I also have a bath board, but it’s awkward to use so usually manage without. When bathing I need to be careful of dizziness and of getting cold. I sometimes need help to get dried. I am unable to wash and or dry my own hair, it is washed and dried for me twice a week. I keep my hair short so it is quicker to wash and dry as I find holding my head up and having it moved around makes me feel dizzy and it gets quite uncomfortable.
I don’t have showers as it is hard to work to stand and I also get too cold.
If I am able to lie down in the water I use the bath to help manage pain and to get warm. I am not able to use the bath as much as I would like to as it is hard work.
I usually wear loose, warm and comfortable clothes, without fiddly fastenings. I rest in my clothes during the day.
Daily Living with ME pt5
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;
Elimination
Well in the natural process of things after Eating & Drinking you get Elimination.
As explained in Eating and Drinking I have IBS. My stomach symptoms include pain, bloating, constipation, diarrhoea, indigestion, nausea and vomiting. I have had IBS for about 33 years! The pain can be excruciating.
I recently had an endoscopy and colonoscopy to investigate why I had anaemia, a common cause is bleeding in the gut.
At the moment I am fed up of stomach pain and wind, lovely!
I do feel that my ME has an effect too, sometimes I feel my body doesn’t have the energy to digest my food properly so it goes straight through (diarrhoea) or others times it doesn’t have the energy to expel waste (constipation).
I also have an irritable bladder which causes leakage and bladder spasms. The bladder spasms happen mostly when I am laid down which is very frustrating when I need to rest or sleep. I also get Interstitial Cystitis which is like Cystitis, but without an infection present.
I am able to get myself to the toilet most of the time, but it can be exhausting and sometimes I need help to walk. We have a toilet on the living level so that makes it easier as climbing stairs all the time would be too much.
I have a radar key for using disabled toilets when out as this avoids queuing and stairs. The only issue is that it is huge and is something else to carry around.
I think we can now eliminate this topic!
Daily Living with ME pt4
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;
Eating and Drinking
I am slightly underweight and most medical people assume that it is because I don’t eat and that if I eat properly I will be fine!
I eat well and should be much heavier than I am. I have several food intolerances; wheat (gluten), dairy, refined sugar, caffeine, fish, yeast. This is a bit of a nightmare, but means what I do eat is fresh and healthy. Gluten free and dairy free foods are very expensive and often full of sugar, but I have found some that I can tolerate. I have yeast free, gluten free bread made from a mix, which someone has to make for me and it works out very expensive. If I eat out it is impossible to avoid all the things I am intolerant to, so I always avoid wheat and fish as they make me really ill and I have to put up with the effects of what I do have, which means eating out is not the pleasure it should be, but I have learnt how to minimise the effects as much as possible. We don’t eat out much anyway as it is too demanding and stressful. My diet makes visiting other people rather awkward and many don’t understand the necessity of sticking to it. I would not eat a gluten free diet by choice.
My stomach symptoms include pain, bloating, constipation, diarrhoea, indigestion, nausea and vomiting. I have had IBS for about 33 years! The pain can be excruciating.
I take anti spasmodics when symptoms are bad, but following the diet has helped a lot. I can also tell quite quickly if I have accidentally had something I shouldn’t have. Food shopping is hard work as wheat is in so may products that you wouldn’t think of. I have to take a fibre supplement and multi vitamins and omega oils supplement. I currently take additional iron supplements, but it is only till end of this course. I had a 3 month course of Vit D supplements but these were stopped as my level got up to the minimum required, I suspect it will probably have dropped of again especially now it is darker and colder outside.
I recently had an endoscopy and colonoscopy to investigate why I had anaemia, a common cause is bleeding in the gut. My tests only showed a hiatus hernia, which explains the chronic indigestion. The indigestion is mostly controlled with Omeprazole, but sometimes the dose is not enough and I need antacids too, it’s very much dependant on what I have eaten.
I am unable to cook a meal for myself or my family so my husband has to cook alongside his full time job. I can usually get a light snack and hot drink. I can’t chop ingredients or stir pans of food, but could put a jacket potato in oven for example. We tried to get carers to cook meals sometimes, but it just didn’t work out and many care agencies are not allowed to make meals only warm a ready meal. My PA sometimes prepares a meal for us to warm up later.
My daughter likes cooking, inspired by bake off, but I can only supervise her. At the moment she likes to do the Bake Off technical challenge where the judges get sent out of the kitchen, so that is easier for me as long as I supervise the oven parts. She has recently got interested in making gluten free things and more savoury things, before she would make things she knew I couldn’t have. Again I think Bake Off has helped with this.
I always enjoyed cooking and do miss being able to cook and provide my family with a meal.
Rob also has to do the food shopping. I can manage an online shop every so often, but I get easily confused and it wears me out. This means I don’t have a lot of say in what we eat and I can’t browse shelves for inspiration as you can in the shop.
Being low weight means I do have to eat regularly and even if I really don’t feel like it.
I have a kettle and tea bags upstairs so that I don’t have to go up and downstairs every time I want a drink. Decaf tea only, but there are some great non caffeine teas now. I don’t have milk or sugar so it’s very simple. I don’t really like cold drinks, except if very thirsty or hot, which is rare.
I see lots of lovely sounding recipes, but get down because I can’t make them or because the ingredients would just make things to expensive. It’s the downside of spending quite a lot of time browsing the internet when i am not able to do much else.
Because I can’t always eat the same as everyone else it can cause problems with family meals as Emily wants to have something different or she will refuse the gluten free version that we are all having. Meal times can be very stressful and that doesn’t help my digestive issues. We also find it difficult to plan meals in advance which makes getting a meal ready rush and stressful. Four out of seven nights Rob and or Emily are out just before or just after tea so it makes things very rushed.
If I have having a particularly bad day I find it difficult to swallow.
I get quite a lot of sores in my mouth and frequently bite inside my mouth. I have intermittent issues with wisdom teeth including site where one was removed 15 years ago!
I have sore throats much of the time and cough a lot after eating. I have a constant sensation of something running down my throat, which saliva does, but most people are not aware of it. I had this investigated and was told it was fine and may be due to sinus issues or just a heightened sensation.
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.
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