Have a Holly Jolly Christmas, it’s the best time of the year
What happens when it’s not? What happens when you don’t get to Have a Holly Jolly Christmas and what are the repercussions for someone with an illness like Myalgic Encephalomyelitis?
Christmas 2023 for me just went from bad to worse and I know I should be feeling all positive for the start of a new year but I just haven’t got it in me to even pretend that I’m ok anymore.
Getting odd jobs done around the house
We had been needing to get things done around the house like painting and a deep clean. For us to have anyone do a job at the house it has to be arranged for a day that Graham is home. So this can mean someone or in this case, sometimes 3 or 4 people a day came to price up the jobs on Grahams’ day off, then if we are happy and want to go ahead with the job we need to sort out a Thursday that they have available to do the job.
Yes now I know I should have had all of this done long before Christmas but with my health being so bad I just couldn’t even arrange to wash my face most days let alone get someone to come to the house to quote for a job. Yes, the jobs we needed to have done ended up being bigger than we expected or as you will hear about in this post how bad luck and misunderstanding led to one that destroyed Christmas for our family.
We have put so many things off that have needed doing for years, like the tile that fell off the roof leaving a small hole that allowed birds in, or the carpet on the stairs that was so disgusting it was an embarrassment. I think having it all done around the same time put me over the edge then this situation just pushed me too far. I was a mess my body felt like I needed to scream out and cry hysterically until I couldn’t cry another tear, I couldn’t sleep, and I couldn’t eat without wanting to be sick which all led to my whole body shutting down leaving me unable to do anything. Many days after the holidays I only woke up to take my medication and was out of it again minutes later.
While some people know that Myalgic Encephalomyelitis leaves you feeling tired most don’t understand how badly mental stress or anxiety can leave someone who has ME. I know that anytime my adrenaline rises in my body I will feel severe negative effects, nausea, and migraines until I crash with absolute exhaustion, it’s like my whole body shuts down and works against me.
The House
Our house is over 15 years old now and while we have painted the walls or had wallpaper hung for some feature walls the house was pretty much magnolia everywhere and I hated it with passion.
My Hubby and My Brother in law decided to make a start in the kitchen. It desperately needed painting everywhere, the ceiling, the doors, and down to the skirting boards which needed a proper cleaning before they could be painted.
After one day of painting, My Hubby insisted I get someone in to do it. It’s simple in practice but for us, it meant people coming up to quote and then if we were happy the job itself had to be arranged around my Hubby’s days off. I must stress that we needed to work this around days off for a manager in retail in December.
December was a living nightmare, the job on the roof needed scaffolding put up, we had companies coming to measure up the stairs and new Lino for the kitchen, and of course, the painting. We also needed an allrounder as we needed curtain rails put up in the family room as well as odd jobs that needed finishing off like the beading around the laminate floor, plaster patching up around the window from past attempts/fails, and the ledges needed someone who knows what they are doing as the plaster near the window ledge crumbled like a crumbly cheese.
We had a few jobs for an electrician as we needed the shaver sockets replaced in our bathrooms after one blew up on me and somehow caused both sockets to blow one in our bathroom and the other in the upstairs bathroom, we also had light switches that needed to be changed. Then the thing I had been looking forward to the most was the lighting outside our home, this had needed a revamp for years, we had those standard ones still up they still hadn’t been updated from the lights that the builders fitted when we bought the house. Yes, I wanted all of this done before Christmas.
Problems Problems Problems
The walls around our house are awful for trying to drill into, it’s like there is no strength to them. We had tried everything with zero success. They are so bad that I try to avoid having anywhere drilled around the house now. A few years back I switched over to command strips and was so happy with them that I even used them on our bathroom mirror. Unfortunately, I couldn’t find a command strip that would work for our new curtain rails. My distrust for screws in the walls comes from having to put up curtain rails in the past and then watching just waiting for the day they start drooping on one side, nothing ever stays up. This has meant over the years the walls above our family room windows have had lots of failed attempts. Every success is short-lived so I decided to only put voiles up so that they do not have to take much weight.
The ultimate Christmas Fuck up
We had arranged for someone to come out and quote for our stairs plus a new Lino in the kitchen. The whole kitchen needs redoing as it doesn’t work for someone in a wheelchair but I don’t want to pay out for tiles knowing that the whole thing needs ripping out and starting from scratch.
We spent ages with the man who came to measure up as our kitchen is a funny size so when he sent the price across we had to commit quickly so that we could get a delivery date before Christmas.
So here I put my computer away as I was hoping that in the next few hours, I could delete all of this as they have corrected their mistake.
Unfortunately, after sending several messages I even had a conversation with the company then after that sending several more messages to follow up I can confidently say that they do not seem to have any interest in wanting to rectify the issue which destroyed my Christmas. It is now 11th January 2024 so here is my side of the story.
After paying for the materials over the phone our job was booked in but to ensure we got the day we needed they were going to offer one of their other customers the earlier day that I had been pencilled in for so that I could have the last date possible as I needed. my Daughter to be home for the day of the fitting. We had been talking to different people from the company, the man who came out to measure up, a man in the shop who took my payment and a different person on their Instagram page for any questions or queries that I had.
As a Myalgic Encephalomyelitis Sufferer, I needed complete rest to prepare for Christmas
For me to be able to enjoy any type of Christmas festivities I needed to rest completely and as I was already feeling under the weather resting was so important for me.
With Myalgic Encephalomyelitis lots of people are affected in so many different ways. My family will notice immediately when things are really bad as I will struggle to speak, I will take long pauses between words or I will start shivering uncontrollably. Unfortunately, as part of my symptoms, it is normal for me to forget names and what things are, for example, I will forget what a table is called. My Husband and Daughter know this happens and have adapted to it. As you can imagine this affects my confidence exponentially so I try to only communicate in writing be it a text message, via social media or by email. This gives me the ability to look up the name of something I forgot or my Husband or my Daughter can finish it off if it has gotten painful to see the screen or be upright.
Each time I communicated with the company I was asked what it is we are fitting for you and every time I said stairs and the kitchen.
I am at fault in so many ways for this happening because I should have looked closely at the receipt that they texted to me but I was already dealing with so much, plus in my defence the receipt said materials.
The company had not told us “We have not been able to quote for your kitchen” or “we will not be able to fit your kitchen floor”. In each communication I had with them they always asked what is it we are doing for you and I always replied Stairs and Kitchen yet not once did they say hang on a minute we are only doing your stairs. Even when I asked if we needed to take up the stair carpet and Kitchen Lino before they arrived they did not say “We aren’t doing your kitchen.”
So an exhausted Hubby ripped up the old kitchen floor and the carpets from both staircases after a very stressful day at work before falling into bed with not an ounce of energy left to give. He had to do this alone, moving the fridge, the dining table, the washing machine and the dishwasher.
What is it like for someone with Myalgic Encephalomyelitis
Everything was everywhere our home was a mess but most importantly for me, it meant that I had no access to anywhere else other than my bedroom. Simply put it wasn’t safe for me on the stairs as when I go down the stairs I have to go down one step at a time on my butt, so with the gripper bars being exposed chances are I would have hurt myself.
This illness means that I am clumsy enough on the best of days as I don’t have full control over my body my mobility and dexterity are incredibly poor. I need support constantly. I can tell my foot to move but it’s like the signal doesn’t get to it or I can want my hand to move as the water is boiling but it’s like there is a disconnect. As everything was taken out of the kitchen and put in our TV room from the Lino being taken up and the painting job I also had no access to my wheelchair. Living life with Myalgic Encephalomyelitis is very different for many different people so if you suspect you may have ME here is a link that may help you https://alishawhittam.com/myalgic-encephalomyelitis-symptoms/
The Grinch who stole Christmas
It was a few days before Christmas Day and we didn’t have a single decoration up, I finally had my Daughter home. I had been dreaming of this on every bad day it was what helped me get through my darkest days. I wanted to be able to go out to see the lights on all the houses, I wanted to hear Christmas music as we went around the shops most importantly I wanted to get a hot chocolate with squirty cream and marshmallows with my baby girl. This year even that was an anti-climax, not my Daughter she is perfect as always but even a few days before Christmas it felt like Christmas had already gone. This year it did feel like The Grinch stole Christmas.
So the 23rd of December arrived and the fitter texted me to say that he would be fitting us in the afternoon. Everything was a mess and so much still had to be done to get the house ready for Christmas. I was looking forward to Graham getting home so that we could go to TK Maxx with Becks which is something we only get to do once a year on Christmas week. With Graham wanting to put his feet up at home Becks & I had the night to treat ourselves at TK Maxx, most of the time we come back with lots for Alfie but it is always nice to just have time with My Princess. This year on the list, I wanted to get new cushions for the couch in the TV room if I could find some fluffy blankets, our favourite Italian biscuits, Pyjamas and fluffy bed socks then I would have to take them home too.
23rd December
Our fitter arrived early afternoon and quickly got to work. After a few hours, Becks came up to my bedroom to tell me that he had finished but she didn’t think that he had done the kitchen, my head was ready to explode. So I went to the stairs and politely asked him if everything had been done, I commented that was quick I even said wow that’s impressive for you to do both sets of stairs plus the kitchen that quickly.
I know that this was not his fault so there was no point in me getting angry with him so I gave Becks the money to pay him. I immediately started messaging the company. While Becks was in the hallway paying him the fitter said that the information for the kitchen job was on his sheet but he had not been given the Lino for our job and that he thought the Lino may not have arrived in time or was out of stock.
Please remember that not once had we been told that they could not quote for the kitchen or that the item was out of stock and yes I know that I should have gone over everything with a fine tooth comb but I was so focused on conserving all of my energy to be able to get out to TK Maxx with Becks for an hour then resting completely so I would be able to enjoy Christmas Dinner with my family. I had ordered our Christmas Dinner in October that’s how far in advance things have to be done for me to take part in anything. All I wanted was a nice family Christmas Dinner and to see her and Alfie open their Christmas gifts. Then the highlight of the year and something we all look forward to all year is to hear Alfie make happy yummy noises when he eats his Christmas Dinner.
So it began
I worded things incredibly politely in the email I sent to their Instagram page, especially as I was such a mess when the fitter was leaving. It became crystal clear very quickly that the person I was speaking to on Instagram had started their Family Christmas and blamed me for not reading the receipt as it couldn’t be his fault as while he manages the company Instagram he doesn’t have the same information as the office so me saying we are having the Kitchen and Stairs doing didn’t mean a thing to him. Surely if you are customer-facing in any job be it face-to-face, on the phone or answering Instagram messages you should still be able to accurately help a customer and answer any questions or queries they have.
I lost my temper of course I did, I was so upset that I couldn’t see the screen through the tears. Please before you judge me harshly just remember that for my family it all starts on Christmas Eve. We all wear matching PJs including the dog and we sit down at our dining table for our Chinese Food from The Nine Dragons in Aintree, it’s something we have done every Christmas since Becks was little. Then Christmas morning we have bacon butties in the kitchen, everything happens in the kitchen.
We lost two family members in the last few months of 2023 and not being able to attend their funerals was incredibly hard. Christmas is always difficult when your heart has been broken as many times as any member of our family has. So I knew Christmas Day was always going to be a difficult day.
Christmas Day is my big day/night out it is Christmas Party night/Birthday Celebration/New Year’s Eve and everything in between. Christmas Dinner was going to be the first roast dinner cooked in our house since Christmas Day 2022 and we do look forward to it, it’s my day to attempt to sit up at the kitchen table with Christmas songs on low in the background. On Christmas Day we get to be normal, some of us will even tell a few bad cracker jokes, and put those awful crowns on that never fit anyone. Then in our house, it’s time for something we all look forward to every year we get to watch my baby boy demolish his Christmas Dinner making the funniest noises which leave us all hysterical like we do every year.
I spilled my heart out
Even after explaining all of this to the man on Instagram, I could tell he didn’t give a damn he made comments like he was doing me a favour and how he will leave his family time to go see what they have in the warehouse but chances are it won’t be the right size and how he was going to struggle to get someone to fit it. No matter how bad it left me I didn’t want another family to have their Christmas destroyed so after taking a few hours to calm down I sent a message to say that my Hubby was off tomorrow with it being Christmas Eve in the hope that something good would happen. I was hoping for a miracle.
Christmas Eve 2023 was to be the first Christmas Eve that I had ever spent with my Husband, it was to be the first Christmas Eve that Becks got to be with her Dad in her life. Another day was destroyed thanks to this mess up. I sent him Graham’s number and said I was going to hope that there was somehow a Christmas Miracle and that somehow my Kitchen wouldn’t look like the picture above.
One thing that I was certain of was that if I had known that the bill was just for 2 staircases then I would never have gone with this company. As far as the company was concerned we had what we had paid for and that they are closed until 3rd January. No apology for destroying my Christmas.
I spent the rest of Christmas Eve crying and while we did get our Chinese meal the room felt awful, normally Becks would put a tree up by the dining table the whole room would be colour-coordinated down to the napkin rings but Christmas was ruined for my family. They could see just how bad I was and Graham said he just couldn’t sit down to eat at our table on Christmas Day without me sitting in front of him After Dinner we normally watch a film together and while most years it starts on the sofa then ends up being in our bed we didn’t even do that this year.
We didn’t even decorate
Most of our Christmas decorations didn’t even make it out of the loft this year. No garlands down our staircase, no nutcrackers on our coffee table, no little silver sparkly Christmas trees across the sideboard in the hall, no snowmen lights adorned our mirrors and no Cherries on Snow Yankee Candle filling the rooms throughout our home with its intoxicating cherry and vanilla scent. The house felt cold and dark.
I managed to get up to open presents in our family room on Christmas Morning, on Christmas Eve night I am normally so excited that I can’t sleep. I try to make every year special for my family as more than anything I still love seeing Becks & Alfie open her gifts, seeing Alfie not caring for the tree being in the way of his gifts and just steaming in like a tank. You need to keep away from an excited Labrador as their tails are lethal. We have to tackle him and hold him tight as he is like an excited toddler but with a lethal tail that whips through the air, its so funny to watch.
Normally I will get up at 5 am on Christmas Morning as I can’t wait but this year for the first year in my life Graham had to wake me up. The pain was so bad that all I wanted to do was crawl back under the covers. After the present opening that is exactly what I did until 7 pm, I don’t even think I called my Dad this year I was in so much pain. I didn’t even eat a Christmas Dinner. Becks and Kieran sat down to Dinner before leaving to travel back down south.
I did manage to take Dinners around to Graham’s mum’s house at 8 ish. I stayed in the car I had nothing left I didn’t even manage to hug her to thank her for her gifts or even say Happy Christmas.
Happy Belated Christmas and the Best to you all for 2024
Today is the 9th of January and the first time that I have been able to dictate to write this post. I still haven’t wished anyone a Happy Christmas or good luck for the New Year.
Unfortunately, if you suffer from an illness like the one that I have you have to take so much out of your life to do any kind of living.
Life with Myalgic Encephalomyelitis has to be one of the most awful types of life to live because the illness takes everything. When I was unable to control the illness it punished me severely and while today I have been able to dictate this post I know that I will be dealing with the consequences of Christmas 2023 for a long time to come which is a part that people don’t get to see, its certainly something that a flooring company in Merseyside don’t give a damn about.
So please use my naivety as a warning if you suffer from Myalgic Encephalomyelitis or anything similar because sometimes people’s words mean nothing. I put my trust in a company with no repercussions on them yet it destroyed a day I had been planning since 26th December 2022.
Don’t be like me and check everything no matter how bad you are at the time, if you can’t check it yourself just forward it to someone that you trust to ask them to check it. Ask lots of questions if you don’t understand what something refers to.
Something that a healthy person doesn’t have to care about can take us out for weeks or months and I don’t want anyone else to be as much of an idiot as me. So please read everything no matter how bad your symptoms are and if you are so bad that this awful won’t allow you to do this yourself send all of the information to someone you trust. Don’t let bad experiences ruin something important to you the way I let it ruin Christmas for me and I know it is easier to just write this down after the fact.
Lets make a difference
Rather than letting negativity in for 2024, I ask for your help
- If you have dealt with a business regardless of the type leave the information in the comments below so that I can start sharing that information with others.
- Let’s start showing the positive experiences we have as people with disabilities so that other people with disabilities can contact them. For Example if someone needs a contractor in Scotland or a mattress shop in Devon, we know the best store/people to go to because it has been recommended as a store/person who understands the needs of a person with a disability.
- Leave their information in the comments below including your city and the type of business so I can compile a database that people can easily search.
- Let’s give back support to businesses that we feel supported by.
Happy Christmas and Best Wishes to you all for 2024
I know it’s late but I hope you all had as wonderful a Christmas as you could manage and that you spent as much time as you were able to with the people who are most important in your life.
I hope that 2024 is everything that you want it to be.
More than ever I hope that I can do all of the things that I want to achieve this year as my number 1 priority is to make a difference in the lives of Myalgic Encephalomyelitis sufferers as well as people who have had their lives changed by disability.
Sending you all so much love always,
Alisha 🫶
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