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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
Tears and Salad Pt 1
What do you do when you have a special holiday booked and just 4 hours before you set off you get a phone call with the worst news?
Well this year I found out. We we ready for our trip to Disneyland Paris, booked as a special holiday as my Daughters first time abroad and my Husbands 40th birthday. Then we got the phone call, my Dad had died and it stopped us completely in our tracks. Dad had been ill, but seemed to be getting better and had been discharged from hospital where he has been for 3 months, to a nursing home, just 2 weeks before. How do you tell a very excited 10 year old that her beloved Grandpa has died and that she can’t go on holiday? The answer is that you don’t! With the approval of the rest of the family we went ahead with the holiday. We couldn’t avoid telling Emily about her Grandpa, but being able to go on holiday made it easier for her to cope with.
For me having a chronic illness and suffering a bereavement and going on holiday, I still have no idea how I kept going; adrenaline, pain killers and sheer determination must have helped. Normally just one of those events would have been too much and I was worried about how I would manage the holiday before we got the news.
I think the holiday did us all good, but I felt so guilty about being away and enjoying things and kept randomly bursting into tears, but then I felt bad about that too as I didn’t want upset my daughter. It was hard going around EuroDisney whilst sending texts and emails about death and funeral arrangements and knowing that there would be no rest when we got home as we had to go straight to the family and start arranging the funeral details and other related matters.
I normally find holidays hard work and stressful and things do have a habit of going wrong when we are away. Last year my Mum and Dad ended up in hospital and the year before Rob was ill when we were away and it does make me wonder why we go when things are already so difficult.
After asking my Mum what she wanted us to do and being told to go, we did just that. I still have no idea how I did it. Luckily for me I was more organised than usual and had no last minute packing to do. We were even outside waiting for the taxi early, it was so unreal. When travelling you meet a lot of people along the way; taxi drivers, ticket collectors, train assistance, hotel receptionists, who all say hello how are you today. I just wanted to say, “Do you know my Dad died this morning.” I sat watching all the people coming and going and thinking they have no idea my Dad just died. Luckily for me it was quite sunny so I was able to hide behind my sunglasses a lot of the time. This is me and Emily on the first leg of the journey.
We travelled to London and were staying the night in London before catching Eurostar to EuroDisney the following morning. Not wanting to sit around when we got to London we decided to check in to our Travelodge and then venture out again. In London we discovered that Sunday opening hours are later than at home and that shops were open 12 till 6, so we decided to take Emily to Hamleys, I mean where else to do you take a child in London when their grandparent has just died?
Getting around Hamley’s in a wheelchair is a nightmare and one member of staff took pity on us and took us in the staff lift, I had to choke back the tears then, I can’t cope with people being nice to me! Then we found an amazing Gluten Free Restaurant in Soho. I am so used to struggling to get nice food, that it felt wrong actually having a nice meal when my Dad had died.
Then it was time for bed, I did sleep a bit, but every time I woke up it was just going round and round in my head, my Dad died, I won’t see him again. It still does now 5 1/2 weeks later and anytime my mind is not occupied or even when it is. I was still thinking “how can I be going on holiday, it’s all so wrong, but I have to do it for Emily, I can’t break her heart twice”
So off we went to the Eurostar.
Me and Emily boarding
Check back for tears and Salad pt2 to follow and find out how we got on at EuroDisney.
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.
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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?
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What can I do?
I am so fed up of everything I do having consequences and affecting me so much. I know I am always doing too much and doing things that are not good for me, but if I cut out all the bad things what would be left. Life goes on and you can either go with it as best you can and make the most of it or give up. I can’t give up with a 7 year old to care for and a house to keep in order. If I did the bare minimum I would probably feel ok and be able to cope, but that would mean never going out, not being able to do things with my daughter, not having anyone in the house and so on.
I have commitments each day and although I rest each afternoon I have to be up early and getting on with the day. Might not seem much to others, but putting in the washing and making sure Emily up and ready and taking her to school, I am exhausted before 9am, well I am exhausted before I get up! I go to bed early, but then get fed up of being in bed because I can’t sleep and then need to get up because I am in pain or my mind is driving me mad. I am really struggling today as I had my hair coloured yesterday, along with Emily having a friend for tea and then having tantrums too. I was in bed at the same time as Emily, but then only got about 4 hours sleep. I can’t sit down for long as its uncomfortable, but I can’t move about a lot either although I do much more than I should, stairs are a killer, but they have to be climbed and I wouldn’t want to not use them, but the effort builds up through the day and that final climb to bed can feel like Everest and of course you can guarantee I will have left something I need downstairs! If I do sit down or lie down my mind starts racing with things I need to do so I get up and try and do things, get distracted by something else and end up doing too much. I try to save my energy for when Emily comes home, but despite resting (well laying on the bed) for two to three hours by the time I get her home I am ready to rest again and then there is no chance until she is in bed and then there are usually things to do and by the time I do get to bed I am running on adrenaline and can’t sleep and so it goes on.
What should I do with myself. I sit at the computer when I am not able to do other things, but its not good for my pain and makes me dizzy. Its often my only contact with the outside world, but then if there are things I need to deal with I get stressed about them. My contact with most people is by email or text due to my hearing loss, which is better for me as conversation is difficult to concentrate on even with good hearing.
But I need to get out and have contact sometimes, but then the effort of going somewhere is so much I feel ill and can’t take part or can’t follow conversation. Then wonder why I bother and come across as being ignorant and or stupid.
I type my blog as an outlet, but it really is hard and not good for my health, but helps with my sanity I think.
I know that I need to do much less, but things just pile up, I don’t work, I don’t do my own housework or even wash my own hair, but that means I have to have people in who do it for me and that can be just as draining, having to make conversation, cope with the noise and disruption and people competing for my attention and the associated paperwork and organisation really gets to me. I have just had a letter from the council saying I need a review of the money that pays for my care and help. I need that money to exist, but the effort of justifying it is so hard. Last time they took quite a bit of it away from me, I expect they will do the same again. I know the government need to make cuts and that we can’t expect free money, but its the way it is done, its such hard work and you feel like a fraud, whilst of course many people get away with it. I don’t have the energy to fight again and sometimes wonder if having the help is more trouble than its worth, but what would I do without it, I can’t afford to pay for it myself. There are some things that I would have to pay for somehow and other things I would have to go without, but that makes life even harder, not to mention the stress of it all too.
I know I am lucky in that I can do some things and I have to be grateful for that and I know many people suffer much more financially, my husband does have a job, but if I lost my payments he would be working to pay for me being disabled, that’s not fair to him. I get no benefits and only got the care payments when I was in hospital whilst pregnant and my husband had cancer and couldn’t care for himself let alone me. I still get them as I have a child to care for and a husband with health issues, not because I am ill myself. Apparently people from benefits are reading peoples Facebook and blogs etc to collect evidence of fraud, well good luck reading mine, its not very exciting and you won’t find any pictures of me mountain climbing or jetting of to foreign places, unless they are wheelchair friendly and cheap! I can’t even walk to the bus stop or even to the end of the street! It’s sad that the people committing the fraud are good liars and those of us with genuine claims are treated like liars.
My wheelchair and scooter give me a life outside the house, but I need someone to push me in wheelchair and my scooter needs servicing and its too cold to use it now anyway. My walking stick is supposed to help me, but I am just as likely to trip over it or drop it so it becomes a nuisance and most of the time I am not walking far, but I should use it more. It’s such a pain always being different though when all you want to do is blend in and be normal. My daughter has been picked on because I am disabled, how cruel is that?! The last thing I want is for her to suffer because of me, but of course she does, either because I am limited in what I can do with her and for her (I already do more than I should), or because I can’t hear her or can’t cope with the noise and energy that she has. I try to make sure her life is as normal as possible, but it’s always going to be a bit different. She will always stand out as I need to park in the school car park as I can’t walk from the street parking an issue which continues to cause problems even though she has been there for 3 years. Last year I had to take her in through school rather than to the classroom door as it was too far from the car park, so she will stand out and its not what I want, but I want to be able to do these things for her.
I enjoy craft activities, but do them less and less as I struggle to concentrate and get out and put away the stuff I need and it often seems pointless as I have an item that I can’t do anything with. I have made lots of bracelets, but never wear them, I hardly ever go out and if I do I don’t put much effort into getting ready. I make cards, but always seem to miss the event I was making it for so it either gets unfinished or stuck in a box. I like knitting, but struggle to follow patterns and keep track of where I am so again little gets done and have many unfinished projects with starting something which might be easier to do and can’t do that alongside watching Tv or having a conversation. I have spent two years making a quilt, its almost finished now, but only really do it at the classes and what will happen to it when its done? Nothing. I have enjoyed doing it, but its not what I wanted it to be. I struggle after going to the classes and now Rob has to go with me to help with the carrying, driving, cutting and instructions so its not really a thing for me any more. I really have to try and rest tomorrow as it is this months class on Friday. Hoping to get a small Christmas project made, but en what will happen to that, it will spend 50 weeks of the year out of sight. But I want to do things, its so frustrating.
I like cooking and baking, but can’t manage the preparation or standing over anything, can’t follow a recipe. Occasionally make packet mix buns with Emily, but only if she mixes it. I have to make my own bread with being intolerant to gluten and yeast, thankfully I have now found a packet mix for that, before I only had bread if Rob had time to make it, but its all still an effort and there is no enjoyment in it. My cooking is limited to something I can put straight in oven or microwave or Rob has to cook when he gets home, so our meals are rather limited. The oven is currently broken so limits us even more and I can’t ring up about it and Rob hasn’t had time and can’t get someone else to do it as they need to be able to explain the problem. Add in my food intolerances and food gets very boring. I depress myself finding lovely looking recipes on Pinterest, but we never get chance to try them or they are not suitable. I mean what can you have that’s gluten free, dairy free, sugar free, fish free and easy to prepare?! Availability is getting better, but its makes shopping and cooking quite a chore. I can’t go to the shop and browse the shelves or shop for nice ingredients, my shopping is made up of clicks on Tesco’s website and hoping that stuff gets delivered or sending Rob to the shop to buy what he chooses. If I do venture in a shop I need my wheelchair or scooter and the lights and noise get too much after a few minutes, but I can’t come out mid shop.
This makes it all sound as if I do nothing, but yet I feel like I am always busy and exhausted and doing far too much. I am worn out doing basics and then if something unexpected comes along and I have to deal with it as often does happen its really difficult, but I can’t just ignore things or wait for a better time as the better time never comes.
My head is fit to burst with frustration, but I am one of the luckier ones, I know that and I have to try and find some good in each day, but when everything feels such an effort its hard to do.
I know I need to change some of my priorities and cut back on what I do and stop letting things get to me as the emotional stuff can be as draining as physical stuff, more so sometimes.
My positives for today are the kind words this morning from Maggy, finishing the card I was making and in time too and finding the happy apps for my phone. But every new thing I take on to try and make things better is another demand on my time and energy, its so difficult to know what is right and what is wrong and with ME it often feels like whatever choice you make its the wrong one and there is a consequence.
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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.
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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.
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Positives end of week 3
Three weeks of looking for positives, surprised I kept going. Many of the day I think nothing positive happened today, but if I think a bit something usually springs to mind.
So for yesterday my positives were not waking up till 8.15am! I am usually awake by 6. Getting some jobs done, well supervising Rob getting some of them done! Going out for lunch to 2 Oxford Place a totally gluten free place in Leeds. Its great to be able to eat most of the things on the menu, I had mushroom soup followed by scone, usually baked goods are no go. There is a daytime menu and evening menu and Sunday menu. There are daily scones, cupcakes, tarts, cakes and cheesecakes. Luckily we had booked a table as it got very busy. It was only our second visit, but well worth the drive into Leeds. Looking forward to trying evening menu some time and Christmas and New Year menus look great. Sad to see they will be closed over October half term and for two weeks over Christmas and New Year, but they work hard and deserve a break. They also run crafternoons
They sound great, but too long and wrong time of day for me.
Had to laugh last night when I went up to bed and went to check on Emily to find
She has been sleeping on the floor for weeks, but its the first time teddy has joined her in the sleeping bag!
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Crafty finds on holiday
Its a few weeks since I was on holiday now, seems like forever so much is going on with school holidays, another funeral, catching up after the holiday, Emily being ill and of course the ME which keeps a firm hold.
So just a short post about some of the crafty things spotted whilst on holiday;
Britannia bed quilt at the Quaker tapestry exhibition in Kendal, more details about the quilt here. It is 100 years old and combines embroidery and knitting. It was amazing.
The main exhibition is Quaker tapestry which was also quite amazing. I thought I had some pictures, but I can’t find them! A search on Google brings up many of them. Also at this exhibition was an excellent cafe with gluten free food and it was all wheelchair accessible, so an excellent find. Emily was not that interested, but there are children’s activities at times and there was an area to dress as a Quaker.
Also in Kendal we visited 1657 Chocolate shop a hit with Rob and Emily and bought chocolate and had a drink of hot chocolate in the cafe, which also had gluten free food. Finally on our crafty day in Kendal we found Paperwarehouse, lots of craft accessories to look at, but resisted the temptation to buy except some basic card and a few bits for Emily to play with.
I will write about our other finds in another blog as I am very tired and struggling to see with a bad headache 🙁 now.
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Mixed feelings, still busy and still exhausted pt1
I am sitting here not sure what to do, I am tired and dizzy, but can’t do nothing as restless too. It continues to be a busy time and is difficult to manage everything and the ME. It makes me feel a bit of a fraud sometimes as there is so much to do and I have to do it, no matter how I feel, but then I look as if I am ok and people don’t see the effort and the consequences.
We went away for the weekend, our 6th consecutive weekend away from home, but this one was a trip away for us to Oxenhope to stay in a lodge on a farm. As Rob was working and Emily at school the packing was left to me, I did not pack a lot as only going for weekend, but forgot to pack cold drinks and a flannel, so was in trouble for that and the little shop on the complex was closed. If I was able I would have driven into town and got them, but I can’t do that, so we had to do without until next day, no great hardship, but I was not allowed to forget my mistakes! Why do people always want what is not there, even if there is an alternative!
The journey there took two hours instead of 55 minutes because of an accident on the M62 on Friday afternoon. It was difficult sitting in the car all that time, but thankfully the weather was good and the views amazing.
We all arrived tired and hungry to find that our apartment was on first floor and we couldn’t park outside. Bonus of being upstairs was the views were great and people walking past could not see in as they could in ground floor. It was a fairly small apartment with sitting/kitchen area, 2 bedrooms and bathroom, but fine for our needs for a weekend.
After arriving we went into Haworth to get something to eat, we chose Old White Lion as they cater for gluten free diets. There were several gluten free options on the bar menu, but mainly fish, which I can’t have or steaks which I don’t like. I chose a goats cheese salad, which could be made gluten free, which meant that the chesses was not breaded and the meal served with out bread and bruschetta (menu). They had a good children’s menu and plenty of eating space. As with most of the things in Haworth accessibility was not easy with steps into each different area of the building. There is also a restaurant which we did not try, but the menu looks good.
On Saturday we decided to visit Cliffe castle in Keighley. We before 10am, to find it didn’t open until 11am, but it does give that information on the website. We went into Keighley in search of a drink and shops to buy the items I forgot to pack. Found the Airedale centre which was cheap to park and easy to access. Being tired and in pain I got fed up of Rob and Emily fighting over who was pushing my wheelchair, they forget I am the one being pushed. I get dizzy in the wheelchair if I am not moved smoothly. All the noise, movement and looking at things gets quite overwhelming. Trying to referee and listen to people gets very difficult and quickly zaps what little energy I have, but I have to push on which means I pay consequences later.
I have to break now as I feel very tired and sick and have to go out soon to see Emily’s class play and show of their work. Its a busy week so not sure when I will finish off this post so will publish this part for now.
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