No products in your shopping cart.
- Cart - £0.00
Tears and Salad pt2
My last post ended as we boarded the Eurostar for Disneyland Paris. The assistance was great and we had seats at a table, so far so good.
Food always causes problems, but as I had ordered a GF meal I thought it would be ok. I got a GF chocolate oat bar, a yogurt and a pot of jam! Sadly my diet is dairy free too so this wasn’t really suitable, not to mention disappointing when everyone else had bread and croissants too. The meal was included in our tickets. We spoke to the the person sorting the food and he said he would try and find me something in the buffet car. Eventually he returned with a bag of gluten free pretzels, which were nice, but that was my lunch and i couldn’t eat all of them as they are dry and salty. I decided to eat the oat bar too, but it was so chocolaty I really didn’t like it, but needs must when you are hungry and need energy to keep going.
We had looked into food options in Disney before we left home as we had heard that it was difficult to eat GF, but we didn’t realise quite how bad it would be. We knew Planet Hollywood had a GF menu and we headed here on the first night. There was a decent choice, but mainly salads, although they were good and generous salads, the only dessert was sorbet. of course the choice of non GF food is amazing.
In the park during the day there are only fast food outlets and nowhere to buy snacks except ice creams and cake. You also can’t eat your own food in the park. There isn’t anywhere in the parks or nearby to buy anything anyway. During the day the only option for me was a very poor fast food salad, lettuce, tomato, cucumber and a little bit of cheese or chicken, with no dressing.
Breakfast in the hotel was pretty good, they bring out a GF basket filled with bread, biscuits, cakes etc. The buffet included fresh fruit and cooked food, but no GF cereal. I ended up having a lot of fruit and the GF bread, and taking some of the bread and cake from the basket for later in the day 😮
All the hotels have an evening buffet, but the GF choice was very limited and the meal was a fixed price which we couldn’t afford.
If you stay in the park to watch the evening parade there is a mad rush for the eating places after so that evening we decided to head for Earl of Sandwich. The only gluten free choice, you guessed it salad! The salad was ok, but when your family are tucking into huge sandwiches, hotdogs, chips etc it’s rather soul destroying. The second time we ate in the Earl, I was cold and fed up, so asked if the soup was GF to go with my salad. They said soup was GF, but when it arrived it had huge croutons in it. I was so upset and tired and hungry that I just threw the croutons on the tray and ate the soup. This was getting so upsetting. I has said before we arrived that I didn’t want food to become an issue, but on top of losing my Dad and being exhausted it was too much and more tears were shed.
We did have a few snacks that we had taken with us, but they could only be eaten in our room.
Our final food disaster was in Paris. We decided to have lunch in the restaurant up the Eiffel Tower, having asked and checked with kitchen that there were GF options we got a table and ordered drinks. When it came to it the only GF option was fish and veg, I can’t eat fish it makes me sick, so I ended up with a very expensive plate of vegetables, whilst the others of course had a delicious meal and dessert.
Anyway enough of food. We had a good time, although it was hard and exhausting.
Being in a wheelchair has it’s advantages as you can get a priority pass for the rides which saves long queues, which is brilliant. Emily would have got so frustrated with long queues and it would have been more exhausting for me. You do upset a lot of people though as you are effectively jumping the queue and there are a lot of people who qualify for the priority pass as well as people who have booked fast passes. For meeting characters you are given a time to go back again rather than queuing, but sometimes there are no slots left so you have to get there early.
I think we saw most of the parks and went on many rides, but not the very fast or scary ones, the worst we did was Thunder Mountain, definitely a one off experience! Emily would happily have just gone around all the time looking for the Characters and meeting them and getting autographs, she has a book with them in and has photos with them and we are hoping to get a scrapbook made too, to preserve the good memories rather than the issues around food and losing my Dad. One morning we had Breakfast with Characters which I think was highlight for Emily.
Selfie in paris
Up the Eiffel Tower
Boat on the Seine (or in my case Insane)
Thunder Mountain
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.
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!!
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
Christmas in July, OMG
Last weekend we visited our friends at Our Handmade Collective to see their Christmas in July event which is running until Sunday. We bought a few things which I can’t tell you about as they are gifts, but for birthdays not Christmas, I can’t think about Christmas in July, I wish I was that organised, but sadly not. We were greeted in the shop by the lovely Claire who despite a painful knee injury was as bubbly as ever.
Handmade collective is situated in the Grand Arcade in Leeds, which until recently was a very run down area of town. It is now being brought back to life by handmade Collective and other small businesses. In 2013 they fund raised to get the Potts Clock working again. We were there to witness the event Clock first strike and can be seen in this picture
Emily loves seeing the clock and we have to time our visits so that we can see the clock chime. When we got home she wanted to make some of the characters out of Fimo
Not a bad first effort, who knows we could be selling the in OHC in a few years time!!
We also had a lovely lunch in Just Grand Vintage tearooms. Staff were very helpful and friendly and there were gluten free options including a fresh baked scone which I couldn’t eat so had to take home. It’s like going for tea at your Grandma’s, seeing the decor and crockery. The toilet is papered with magazine pages from women’s magazines from the 1950’s and 60’s, it’s brilliant, Emily thinks it is amazing that there are things even older than Mummy.
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
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!
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
My Pleasure
Living with ME and its limitations can have a huge impact on what is pleasurable. Things that other people find a pleasure are often hard work. With so many food intolerances I also get little enjoyment out of eating out or even a piece of chocolate. My pleasure can be found in a cup of tea. Not very exciting I know, but I do love a cup of tea, here is what is in my cupboard.
A closer look
My favourites are Redbush, Green Tea and Decaf Tea.
One of my intolerances is Caffeine which many people do not realise is in tea. It is highest in black tea (that’s normal tea). Chart below shows levels in different teas (http://www.ezentea.com/), think I need to save the chart as when I am out I can never remember the levels and end up jittery or worse from drinking the wrong thing.
A more detailed breakdown can be found at Adagio Teas caffeine content along with the Health Benefits of tea
I can occasionally drink small amounts of Green tea, but now there is decaf quite widely available I drink that. Drinking out is getting easier as many places now have standard decaf or a green tea or fruit teas. I do love it if we find a place with a good choice and new things to try. I have to take care with fruit teas as many of them are flavoured black tea, if it’s called tea its usually got black tea in it, ones called infusions are usually just fruit. Decaf teas are not caffeine free though. Adagio teas also states “Also, keep in mind that, because teabags contain broken leaves of smaller size, they produce an infusion with more caffeine than loose tea does. This is also true of very fine loose tea. In comparison, the same volume of coffee yields at least double the amount of caffeine. In fact, most sodas have more caffeine as well.”
As you can see from my collection I buy them in any shops, often getting ones that are on offer. The ones I found most recently were a set in Lidl; Zingy Lemon and Ginger, Raspberry Inferno and White Pear Tatin. They sounded interesting and although I don’t drink that many fruit ones I do like a change, but always go back to the decaf, Redbush and Green tea. The lemon and ginger is quite pleasant as long as its not too strong I am not a big fan of ginger flavour, but lemon flavours are nice and I will sometimes drink hot water with a lemon slice in it. The Raspberry one was made with caution too as apparently it contains Chilli, so I expected not to like it, but you can’t taste the chilli so I like it. The White Pear Tatin was the most appealing, but it has quite a strong vanilla smell, the taste is not so strong, but its too sweet for my normal tastes. I think these will get drunk few and far between. You will notice quite a few with cinnamon in; Apple & Cinnamon, Spiced Orange, and Mango and Cinnamon, its a nice warming flavour and reminds me of things like apple pie and hot cross buns. Also in the collection are some that are not that pleasant, but I have to help my digestion so only drink after a meal, if I remember; Peppermint and Fennel and Nettle they wouldn’t be my tea of choice.
I have found a great online tea company Adagio Teas. As you can see I have a few bags, mainly as I buy enough to get free postage. They have a Rooibos (Redbush) page and Decaf page I have tried them all, except the sweeter sounding ones.My favourite are the earl grey flavoured ones Decaf and Rooibos. With it being fresh and leaf tea the flavours are great. The cost per cup is rather off putting, but I tend to use each lot twice as it is plenty strong enough. I drink all my teas with no milk and no sugar so don’t like them very strong. I have not tried the white teas as I think the caffeine might be too much in these brands. Many places have Teapigs which are very good, but I haven’t bought for myself as they are quite expensive and also Eteket. I have not been in a Whittards recently they are the high street shop for tea and they don’t have many caffeine free ones that I like and they are quite often too sweet. This said most supermarkets now have a good range of fruit teas and alternatives. Lidl have started selling their own brand Knightsbridge including decaf and Redbush.
I have a rather mad idea of hosting a giant tea party with loads of different teas to try where people come along and bring a picnic and pay to be part of the event and there would be cakes and buns to buy and maybe craft projects too to raise money for charity. I could be the Mad Hatter!! In reality more like the Dormouse! I have often thought about this, but the organisation would be too much and if it were to raise money for ME charities I don’t think there would be much of an interest, but there are plenty of other charities equally worthwhile, maybe one day!
Meanwhile, it must be time to put the kettle on now, perhaps I should change my name to Polly! Now which one shall I have this time?
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
ME and Food
This article popped up on my facebook feed this morning, written by Esther Rantzen who has a daughter with ME, who now thinks she may have Coeliac not ME as she has found a gluten free diet has made her feel better. This is possible, but many of us with ME have food intolerances. A relative earlier in the week told me she has had ME symptoms for a few weeks and has been diagnosed with a vitamin D deficiency and needs to take supplements for life. This does start to beg the question of how many cases of ME are misdiagnosed leading to may years of needless suffering. There doesn’t seem to be a standard list of things to rule out before you have a diagnosis of ME.
I have many food intolerances, I have been tested for allergies which all came back clear, but intolerances don’t show up on those tests. When I thought back I did have Vit D prescribed for 3 months in 2013, but that was to correct low calcium. I haven’t had my levels tested then, was just told to return if I felt tired, yeah right!! Should there be certain things that we should have regularly tested? I was also given at that time Iron supplements as I was slightly anaemic, but again have not been tested since and the supplement were only for a short time on the assumption that the imbalance would correct itself. I take a multi vitamin supplement un-prescribed as I know that my diet is not that well balanced due to the intolerances. Again it feels like because of the ME diagnosis even things that do show up abnormal do not get monitored. My GP says it is not worth the trauma of the blood test, hmmmm I think that is a poor excuse I am not a child and have been through much worse things than a blood test! But the tests do cost money and of course the time of the person who takes the blood etc and the NHS will cut back wherever possible.
By my own process of elimination and some very obvious reactions I have found I am intolerant to gluten/wheat not sure which, dairy (lactose), refined sugar, yeast, caffeine, alcohol, fish and Quorn. This makes creating a meal quite difficult and eating out a nightmare. There are many products now that cater for gluten and lactose intolerance, but they often contain other things I can’t have like the sugar or yeast. I find lots of nice looking recipes, but again they often contain something I can’t have or unusual ingredients that I can’t buy or take too much preparation. On top of the food intolerances I can’t prepare and cook a meal, so most of our meals are things that can either be done on advance, or quickly or that just need putting in the oven like jacket potatoes. Meal times get pretty boring. I store all the yummy looking recipes on my Pinterest- Gluten free page but have only tried a handful. Last night I wanted to try sweet potato and apple hashbrowns, but as it required the potatoes and apples to be peeled and grated then soaked in advance I had to find something else instead. As it happened my husband was late home and then had to go out again so needed to be something I could manage most of myself.
My daughter decided that she wanted fish tonight. She loves fish, but I can’t ouch it as it makes me sick! I like fish too and do miss it. So when they are having nice fresh fish tonight I will be having a gluten free Ham and Cheese crisp bake, still not ideal as it contains cheese and cream and it is processed food. They do taste really nice, but have to be added to my don’t eat list as I do react to the dairy, but its less of a reaction than the fish or gluten would be. I was told by a dietician that some cheeses are lower in lactose than others and can be tolerated. I do find I can tolerate small amounts of cheese, but know when I have had enough. I can’t tolerate milk or cream, but again sometimes have to put up with the reaction as there is no alternative. At home I have soya milk and goat’s butter and lactose free cheese and cream. I actually prefer the taste of these, I never liked, butter, cream or milk anyway. Luckily I drink my tea without milk, but do have milk on my cereal so being away from home I have to either take my own milk which isn’t always practical or have a bit of milk, that is assuming there is a gluten free cereal, toast is out of course. Its not a dilemma I have too often as I am not away from home much or I take my own things to self cater even when visiting relatives.
Last week I managed to make my stomach symptoms much worse by eating Gluten Free Coconut Macaroons. They are delicious and I got a couple of packets on a special offer and felt I deserved a treat. I only had one a day, but ended up constipated, stomach pains and with thrush due to the sugar. Sugar also gives me bad indigestion. I take Omeprazole daily for indigestion which if I avoid sugar is enough to keep it under control, but if I have sugar its not enough to keep it under control and I have to take other indigestion remedies on top. So much for giving myself a treat, another thing to add to the don’t buy list. I got some dairy free chocolate buttons, but I won’t be eating them now due to the sugar.
Bread is another difficult area. Many places now make gluten free bread, which is like cardboard, but ok if toasted and covered in butter, but of course bread contains yeast. If I am out I have to have the manufactured bread and hope that I don’t react too badly to the yeast, its usually ok if I only have one lot, but if I had it a few days in a row I would suffer. I have found a good brand of gluten free, yeast free bread mixes which are quick and easy to make and taste halfway decent, but I still have to get my daughter to help to mix them! They are called Helen’s, I buy mine online from this link, but have seen them in Asda. There is also a pastry mix which is quite good, but I didn’t like the scone mix. The seeded bread is the nicest one and I have added banana to it which is very tasty and good use for over ripe bananas without too much messing about.
Helen’s also does some linseed mixes which are nice on cereal or in breads, just need to check the ingredients as some contain sugar and they are packed in a non gluten free area. I don’t really worry about cross contamination as I don’t think that I am that sensitive, but realise that some people are. At home I sue the same toaster etc for normal bread and my own and I handle gluten products for my family. I do find that if I handle ordinary flour I get very itchy hands.
Did anyone watch Great British Bake Off last night, I was watching with great interest the Quinoa flour pistachio cake, but apparently it tasted vile!! Gluten free baking is a lot of trail and error, but some gluten free cakes can be delicious, especially if there is also a way of sweetening them naturally.
I made the mistake of being tempted by a Mrs Crimbles muffin and sponge bake mix as it has tasty looking bakewell tart on it and it was reduced in price, but as with most of the Mrs Crimbles products it is high in sugar, it has more sugar in it that flours! So again I don’t think I will be making it after all, I need to check the ingredients list before I buy. As I do much of my shopping online the information isn’t always there, or if I am in a shop I need to get out quick so don’t check properly!
As an alternative to making my own bread I do buy Gluten free wraps, but sadly these still contain a small amount of yeast, but not in the same way as other bread products. Warburtons taste delicious, but are very expensive at 87p per wrap and they are often out of stock. Bfree make a more affordable wrap, but nowhere near as tasty, but I usually get these as they are half the price. I occasionally buy Gluten free crumpets, but as they contain yeast and sugar I can’t have them often, they taste nothing like ordinary crumpets, but again toasted with goat butter they are ok. Some gluten free pitta breads are also ok, but again contain yeast. I got some gluten free naan yesterday, which doesn’t contain yeast, but not tried them yet. All these products have sugar low down on the list, but that seems to be ok, many things have sugar in them that we just don’t realise and its almost impossible to avoid altogether I just have to be careful the total intake doesn’t mount up as it easily can without realising. Its so difficult getting a balance as to truly know what I am eating I need to make things myself and that isn’t possible due to my ME. Its the same with the yeast I can have some but it’s the build up or large amounts that cause problems.
I don’t think my ME is caused by an intolerance, but intolerances are a big part of the condition and can make you feel really ill, often without realising what you have eaten. I reacted badly to Condensed Mushroom soup, which I knew contained milk, but also contains wheat. At Christmas I was eating Pringles (crisps), and I reacted to them, I now discover they have wheat and barley in them.
Quorn is a strange one, but again make me sick. I think its because it is made from mushroom protein and is fermented which creates yeast. I do have to be careful not to eat too many mushrooms too as there is some link with fungi and yeast.
As well as having the intolerances I have to be careful not to over eat as this leads to my system just giving up and the food goes straight through!
If I stick rigidly to the gluten free, dairy free, fish free, yeast free, sugar free, caffeine free, alcohol free, quorn free diet I can keep the stomach symptoms at bay, but it has little noticeable effect of my other symptoms.
A new diet that is becoming popular is the Paleo diet or caveman diet which is gluten free, dairy free, refined sugar free, alcohol free and I have seen some great recipes, but again they take time and energy to prepare.
In Leeds where I live we now have a great Gluten Free Cafe 2 Oxford Place they have delicious food and can cater for dairy free too, but its still a rare treat as I have to make some compromises to eat there.
So what shall I have for my exciting lunch today?
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
Reality dawns!
I am constantly trying to work out how to have the time and energy for things, in reality I have very little time and energy and use them on things that need to be done to keep every day life ticking over and getting essential rest, so there is very little left for doing the things I would like to do, but complaining about it won’t help. Thursday morning is the time I have the most ‘spare’ time as I have no commitments and no one coming in to wash my hair or clean and no appointments, but that still only leaves me with 3 hours from dropping Emily at school until I need to be in bed to be able to get up to go and collect her. I have been getting annoyed with myself for not having the time and space to do bits of craft so used some of this morning clearing the spaces which were just been used as dumping grounds for other stuff, I now have 2 small work spaces, one upstairs and one downstairs, just wonder how long they will stay like that?!
Yesterday I was talking to Emily about helping out at school, I did spellings for an hour a week part of last year, but found it very demanding. I wanted to help out with the creative time that they have, but realised that I wouldn’t be able to do it, me and my ideas!! then I said what about having an occasional craft group at home with a few friends, another daft idea I struggle when she has one friend to play or just getting her to follow instructions, let alone more of them! Oh dear, now just need to hope Emily forgets about it or I will have some awkward explaining to do.
Yesterday I read Tickle ME a short collection of anecdotes about a girl with ME and the things she does in her brainfog moments. Brainfog is a major symptom of ME and can be rather awkward at times and you do learn to laugh at yourself, well its either that or cry! It is amusing, but also something I could relate to and I am sure all ME sufferers could write similar. Then I started to read From ME to You, With Love a collection of letters written by people with ME explaining how the illness affects them, there is also a website http://www.frommetoyouwithlove.co.uk
To be honest its rather depressing, many of the sufferers are in a worse situation than ME, but there are plenty the same or better, the condition varies so much. This book is being sold to raise awareness and to raise funds for research. I began to wonder though who would actually want to read it, I had to stop as it was unsettling me, when I was already pretty down. The idea is to get non sufferers to read and understand the condition, but why would they want to unless the condition of someone close to them has an affect on them. Many people think they understand or know as much as they need to, although it may not be the reality. If you have an interest in illness and disease or personal stories then yes you might have a look, but are probably more likely to read about a celebrity with cancer or dementia or the like, its much more interesting. it also makes me wonder just how interesting my blog is, rambling on about the things I am not able to do and my symptoms.
I started the blog to showcase craft projects and to write about things of interest to others, but fear that often it is just a big moan. I never expected lots of people to read and know its not of interest to many people, but I don’t want to bore people or give an even worse impression of people with ME. I also wanted it to be a personal record of information and achievements and hope to be able to focus on this more.
I did find noting the positives in each day beneficial, but somehow lost my way. Perhaps I should make note of today’s. Firstly getting the spaces cleared of junk, getting 2 cards pricked ready to stitch and my gluten free food all came in the shopping, its often not available so I end up with no food! Today I got GF Pasta, GF pitta , GF Wrap, GF crumpets, GF custard creams, Ham Crispbake and GF Crispbread and for my lactose intolerance Soya Yogurt, Lactose free cheese, Soya Milk and Goat’s butter. I always order more than I need as its never all available, will have to freeze some this time, but at least I have plenty of goodies. Not had the Ham crispbake or lactose free cheese before so looking forward to those. It is good that supermarkets are getting better at stocking products for food intolerances and allergies and that the prices are starting to come down.
Finally I managed to change my Physio appointment from Monday to tomorrow morning hoping to get on top of my pain and stiffness a bit, its got worse since it turned colder. Having that appointment also means I don’t have to rush from Physio to 5 ways on Monday morning so gives me more chance of actually getting to 5 ways, I have missed it.
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
Lost
I feel like I got totally lost with everything this week. Emily was off sick on Monday so I didn’t get to 5 ways. It was quite nice to have a quiet day with Emily, but shame she had to be ill to get that. She is still coughing, but feels ok. I now have the sore throat and cough and spent most of the week getting weaker and getting upset at not being able to get things done and frustrated at things going wrong.
I lost my way with the looking for positives, which does help.
I am grateful to my friends at ME/CFS parents who have been talking to me on facebook and trying to help by offering ideas and messages of support, I know many of them are in a worse position than me. Wednesday was a particularly bad day, starting with my PA being late and offering no apology or explanation and then complaining to me about some stuff that I am storing in a cupboard to take to my Mum’s next week! The rest of the day went something like this; stitching the whole length of my quilt to find that the bobbin thread ran out at the beginning so nothing was stitched, the cat throws up so Emily goes mad and your husband texts to say he will be late cos he couldn’t find his car key cos it was in his coat pocket, then he texted to say laundrette had lost his shirts, got 4 phone calls with automated messages selling solar panels, put together a new shoe rack to find a piece missing, started to cook some of the tea (Rob usually cooks) Rob came in stirred and dropped some of it on the floor! By the end of the day it was a case of having to laugh so I didn’t cry!! The other thing that helped was writing some things down, it won’t change anything, but was a helpful outlet and was interesting that I actually wrote about other things, not the issues I thought were really getting me down.
On Friday Rob had booked for us to go to a Diwali evening hosted by curry cuisine. It made a nice change to get out, but it was too late and I wasn’t really up to it, I had to get Rob home early to collect Emily from school as I just felt like a huge jelly. I felt a bit better by the time we went out, but didn’t really like the food and couldn’t join in the conversations around the table due to my hearing issues and concentration, I get upset as it makes me look rude. Emily was very good sitting at a table with other children and trying the food, which she would never have done at home. I felt bad as they had made some gluten free stuff and milder stuff for me.
We went to a craft fair yesterday and managed to get a few more Christmas presents. Then made the mistake of going to local supermarket to get something to eat and pick up a few bits we needed. The food was terrible and very little gluten free choice, the shop was quite busy and the lighting is too bright and makes me feel awful. Emily hates shopping if it s not for her so it all gets rather stressful.
I did get some bits of my quilt stitched this week, but as everywhere is so cluttered I had to use the dining table so far from ideal and at one point managed to stitch the table cloth to the quilt! It has worked quite well with the new machine although its hard to see being black on black. There is a bit I need to unpick and redo as it has puckered. In the November and December classes we can make a Christmas project, I can’t go to the December class as I have too many other commitments so need to look for a quick easy project. Sarah gave us an idea which is lovely, but time consuming.
Here are a few
And plenty of bigger projects that might get done for Chrismas 2020!
.jpg)
http://www.e-patternscentral.com/detail.html?prod_id=6826&cat_id=572&criteria=
I supposed I could do a small element of some of them.
I am going to post this now as its taken me 2 days to get this far and I am now in a lot of pain and feeling sick and dizzy. Still waiting for some of the family to get up and I am ready to go back to bed!!
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
Busy week and beginning of Christmas!
It’s been a busy week with half term. I am very tired and have a very stiff neck. and rather dizzy. On my own for a bit today as Rob and Emily have gone to a birthday party. I have to wait in for a charity collection coming to collect some of the stuff from my grandma’s. Last time we booked them they didn’t turn up, I won’t be pleased if I wait all morning for them to do that again.
Poor Emily is full of cold and coughing and sneezing for England, but insisted on going to the party, she got the cold from her cousin who’s party it is, perhaps she thinks she can give it back! Just hope she is ok for school on Monday.
I have been to busy and tired to think of the positives.
On Thursday we went to see Elves and the Shoemaker at Northern Ballet. Its a children’s ballet and was brilliant. There were also craft activities to make an elves hat, some shoes and things to colour or dress up in. Its a great production and brilliant value for money, this is reflected in the fact that it is sold out for every performance. I booked in September and there weren’t many tickets left then, will have to make sure I get in earlier next year. Of course I got the family with small baby next to me which was rather distracting. Emily used a booster seat, but they were inflatable ones and she kept falling off, so she ended up leaning on me to stay on it!! Thankfully the production is only about 45 mins which is just right for the children.
After the performance we went over to The Grand Arcade for some food and the Christmas event at Our Handmade Collective. We chose Casa Columbiana for tea. The food was delicious and most of the menu is Gluten free. I had the mixed beans with grilled chicken, the coating on the chicken was a bit salty, but otherwise great as were the accompaniments and there was much more than I could eat, it would have been better if Emily and I had shared a meal as she did not eat much of hers, she chose meatballs which were very good Rob said, but Emily was not keen, think they were too good for her, she is used to school meatballs!! Service was very friendly and the price quite reasonable, especially for the city centre.
Then we went over to Our Handmade Collective for their launch of Christmas opening and 10% off night. It was busy when we arrived and there is so much to see. Its quite a small shop with lots inside, I think I only saw half the things on display. The staff as ever were very friendly and helpful. We ended up buying much more than we had planned, but its all so tempting and has been made by local people. We got chocolates from Chocolate Chest, bath bombs from Little Shop of Lathers, cards from Jil Made This, earrings from Tina Green, and massage oil for aches and pain from Blue Butterfly and a beautiful handpainted silk lamp from Lucy Lou. Oooops were we supposed to be Christmas shopping think we only bought two gifts!! See Handmade’s own review here. Yes we do want more! The shop itself is quite small so not difficult to get around, but there is a lot to take in and I need several visits to take it in I think. Have seen pictures on their webpage of things I missed. The shop is also accessed by a couple of steps so is not wheelchair accessible. If you are unable to access the wonderful staff would be more than happy to help you and show you anything you wanted, they are a great bunch, very happy and enthusiastic about their shop and products, its a joy to visit. When I just wanted some cards they kindly posted them out to me and many of the sellers have their own websites and attend other events.
I can’t believe we are now in November, where does the time go? Its nice and sunny and very warm for time of year, the roses outside my window are still flowering! Its no wonder there are so many colds about. There were a lot of people out trick and treating last night it got rather tiring getting up to answer the door and I was feeling rubbish, but nice to see the kids having fun and we didn’t get any tricks. Emily came back with lots of sweets.
I read Crushed this week, written by a fellow ME sufferer Holly A Harvey, its a great book, easy to read and a keeps you reading and guessing, it was great company on my pain filled sleepless nights. Well worth a read and a bargain price too.
I must finish now have been sitting here for ages feeling quite sick and dizzy now, but still waiting for collection so no rest yet, but a cup of tea and a more comfy seat will do for now.
To comment on this post, please click the header to this article. This will take you to my blog on blogger.com
12
© Copyright - Crafty Janes - Replete e-Commerce Theme by Kriesi
Recent Comments