Multiple allergies and sensitivities

One of the symptoms of having ME/CFS and fibromyalgia, is being sensitive to chemicals and having food allergies and intolerances.

When watching TV the other evening I caught part of an advert:

'At Ben and Jerry's everything starts with what if......'

... What if they made an ice cream I could actually eat?

..... What if they realised people have multiple food allergies?

.... What if this was extended to all food companies and stores?

..... What if those of us with multiple food allergies and intolerances could buy the normal basics like bread, sandwiches, drinks, fast food, takeaways, meals, yoghurt, smoothies, sweets and go out for a coffee?

.... What if food was just food? Minus the chemicals and additives... Just food?

What a simpler and healthier world it would be

Note:

Just in our house we have allergies and intolerances to egg, soya, yeast, gluten, apples, cooked tomatoes, crustaceans, cashew nuts, peanuts, pomegranate, dairy, thyme, cinnamon, garlic, onion, corn, fish and caffeine

Plus:

No soupy textures for one, no crunchy textures for one, no squidgy or slimy textures for two, no fluffy potatoes for one, no rice for one, nothing resembling actual meat for two, changeable unpredictable demands for particular foods immediately for one and IBS (irritable bowel syndrome) that limits spices, vegetables, drinks and fruit.

Oh, and very picky about brands of certain foods, colours, separating different foods on the plate.

Food is a major stressor here and me being on wheels and currently unable to use the kitchen, access the fridge/freezer or pantry just adds to that. My husband has taken on all the cooking duties for us all with me trying my best to online shop basic meal ingredients that everyone can eat without forgetting what I am doing half way through or forgetting the main parts of the meals (I often add things to my basket but then forget to check out, or think I have ordered something from one online supermarket when in fact I haven't so we end up missing it altogether). One supermarket sells the basics but not the specialist items we love (such as mayonnaise or chocolate spread we can actually eat) whereas the online supermarket that does sell those items is so expensive that I can't justify buying anything but those from there. So we have two food deliveries, from two different online supermarkets at the same time slot......then my husband and child/ren go and get the bits I forgot the next day or we freeze the duplicates.

When I could just go and get the shopping, then add the special items online it was far easier. The brightness, noise, bustle and time it takes to do a family shop now would all be too much. Last time I tried it was around 3 months ago and I had to go to the car before we had finished because I was exhausted.

#CFS/ME #foodallergies #food #allergies #fibromyalgia #fibrowarrior #icecream #chronicpain #chronicfatigue

mortify[mawr-tuh-fahy]

I want this website to be real and not like a social media, edited and photo shopped or filtered version of life as a mum on wheels. So, with that in mind I will share with you the worst day so far.

Today.

I have had my ups and downs with pains and fatigue, confusion, concentration, depression and anxiety over the years. My IBS causes me no end of trouble and I have been through some stuff, but today is right up there.

Today I was home alone whilst the others went to a regular class. The sun was shining and the dogs were playing nicely outside in the back garden.

Then the incessant yapping started from the back garden. I ignored it at first, but then it got under my skin. I tried calling the dogs in but nothing happened. After all, I am two rooms and a long garden away from them with a stair gate in between too.

I tried whistling and calling several more times.

Then there was banging from next door and the yapping was constant, so I decided I had had enough.

I knew what was going on without even looking out of the back door. I knew the dogs would be excitedly trying to entice the guinea pig to play with them, taking it in turns to pounce up on the hutch roof whilst deciding whether to attempt to dig under the wall or not, the excitement causing the smaller of the two to yap nonstop.

With no one being home, I wanted to wear my emergency call button just in case. I slowly sat on the bed, shuffled to the edge, stood up slowly and incredibly shakily, then kept hold of the bed rail whilst rifling through the bedside unit trying to find the button. With the dizziness increasing, my heart beating out of my chest, no sign of the button and the dog still yapping away, I decided I would probably be OK to move the half metre to the closed stair gate.

I managed that and then gathered myself together again.

Opening the gate I saw two brushes to my right and a bag of dog treats around 3 foot in front of me. I used the brushes as walking sticks and reached the treats whilst calling the dogs.

I saw them running towards me from the garden, the room spun and them I was lying on the kitchen floor on my front on the dog toilet mats (thankfully they were folded over in the breeze from the back door). I managed to stab the door shut with one of the brushes and the dogs polished off the treats that had escaped from the open packet as I fell.

Yapping curtailed, I needed the toilet, which is at the end of my bed, back through the stair gate.

I attempted to pull myself up using the door frame but it didn't work. I know from painful experience not to keep trying, so decided my only option was to create a clean, dog fur free trail from the dog toilet area to my toilet.

O dragged myself along the carpet, pleased we had a simple stair gate. By the time I navigated my way around the vacuum cleaner, between my folded wheelchair and my reclining chair and around the corner of my bed towards the toilet (a fetching NHS issue commode designed to erase what little dignity you may have left when you require such an item) I was totally exhausted. The seat lid was on the commode and there was no way I was going to be able to remove that without tipping the whole bucket of urine and absorbant pads over myself, plus then get myself up onto the commode for a wee.

I could no longer lift my head or arms. So I pulled out a cushion from under the bed in front of me and lay down where I was for a rest, hoping time had ticked by fast enough for someone to be home soon.

By the time my husband entered the house I was lying in a puddle of my own urine, three nearby towels pulled over me to try and keep me warm. I cannot explain to you how it feels to have your husband enter the house, knowing what he is about to see but being unable to do anything about it.

Embarrassed

Mortified

Absent as if lifted from my own body

At this point I should give my husband all the praise he deserves. He was so loving and matter of fact. He didn't react with visible shock or disgust, just got on with cleaning me up, mopping up every type of liquid that was leaking from my eyes, nose and that which had previously leaked. He has been amazing throughout this whole horrible illness to date. I feel so guilty and so sorry for him to be stuck with me, but that is another post all together.

My children were all outside in the car, the intention having been to quickly pick me up from the house and get me to my hospital appointment.

They took it in turns to try and enter the house, knock on the door and the window, each time hearing us shouting to them to wait and me crying with the passion of someone who has no dignity or shame left.

And now I am sat in my wheelchair, in the waiting room of the hospital, waiting for my appointment that was half hour ago. Waiting and pretending everything is OK for the sake of my children.

My neck, shoulder, back, hip and pride are all screaming at me with pain, but the face of a mum on wheels is there, keeping it all together and all under the surface so my children don't worry.

Sorry dogs, but we agreed to blame you for the puddle on the floor! I will make it up to you with a couple of new toys.

Note to my children... We have no secrets. We are always honest with each other when questions are asked and I will never lie to you. When you asked what was wrong I told you I wasn't ready to come out yet. That was true. As a mum and as a wife, adult and human, some of the things I am having to cope with and go through are really hard at the moment. Some of them take all my energy to fight through. You are my beautiful children and I don't want your childhoods to be about mummy being ill or weak. I want your childhoods to be full of wonder, amazement and discovery, positive experiences, excitement and learning. I love you all to the ends of the earth and if you have read this then I hope you understand how private it is and why I didn't tell you.

Finally.... Note to self. Find the emergency call button!!

#dictionary.com #embarrassed #chronicpain #chronicfatigue #ME/CFS #fibrowarrior #fibromyalgia #mummyonwheels #mortified