"Professional nap-taker, dog lover, and connoisseur of all things Netflix. Living with Myalgic Encephalomyelitis, Endometriosis, and De Quervains syndrome has taught me to appreciate the little things in life (like a good heating pad and a comfortable pair of stretchy pants). Join me as I navigate the ups and downs of chronic illness with humour, sarcasm, and a healthy dose of self-deprecation. Let's laugh, cry, and occasionally snort in solidarity together
Sensory overload isn’t just uncomfortable – it can be dangerous.
On a recent hospital visit - By 11pm I had to put on my sunglasses. I used my AirPods to block out some of the noise. I was nauseous, shaking, and terrified I’d pass out.
For people with Myalgic Encephalomyelitis, autism, fibromyalgia, migraines, PTSD and many other conditions — this is not rare.
It’s a regular part of care that’s missing: a quiet place to wait.
💙 We need sensory-friendly spaces in hospitals.
This post is part of my campaign for #MEAwareness — and it’s time we talk about it.
Meet Archie Our 8 week old Black Labrador Puppy ! 🐾
Here are some of the clips of our first week with our new puppy🫶
Welcome to Archie’s first week with us!
In this video, we document all the adorable and funny moments as Archie settles into his new home.
From playful interactions to his first training session, this week has been full of love, laughter, and puppy energy!
If you’ve recently bought a puppy, adopted a puppy,rescued a puppy or are thinking about it, this video gives a glimpse of what it’s like to welcome a new dog into your family.
Whether you’re a first-time dog owner, interested in puppy training tips, or just here for some cute puppy content, we hope you enjoy watching Archie’s journey as much as we’ve enjoyed having him.
Get ready for some heartwarming moments!
Make sure to subscribe to follow Archie’s adventures, and give this video a thumbs-up if you love puppies! 🐶
Don’t forget to share with your fellow dog lovers, and leave a comment below if you have any tips or experiences to share about your own furry friends. 🐕
Organising My Tech Bag with This Ultimate Cable Management Kit
In this video, I take on the challenge of organizing my messy tech bag filled with its tangled web of leads and cables. With the help of this amazing Cable Management Kit, I was able to transform my chaotic bag into a neat and tidy space.
Watch as I show you how easy it is to use this kit to keep your tech accessories organized and easy to find.
Say goodbye to clutter and hello to a perfectly organized tech bag!
We still have plenty left to organise the rest of the house.
I’m sure Graham will appreciate using his day off to do this.
It's great for keeping my phone and charger cables organised next to my bed, making them easy to find.
With the cable clips, I can finally secure the Ring camera cables around the window, as they look unsightly at the moment.
Then I can ask him to start working on organizing behind the TV! 🤣
Click to get yours
188 PCS Cable Tidy Sleeves Kit, 6 Cable Sleeves, 50 Cable Clips,2 Self Adhesive Rolls, 20 Fastening Tapes,10 Zip Ties Mounts, 100 Cable Ties
I had to get my Engagement and Wedding rings cut off today 😭
Today was one of those incredibly difficult days.
With severe swelling in my hands and feet I had to make the heartbreaking decision to call the fire service to cut off my engagement ring and wedding ring.
These aren’t just any rings—they hold so much sentimental value.
My engagement ring for obvious reasons but my wedding ring was my Nan’s wedding ring, a cherished gift she gave us on the day we got engaged.
I never took my rings off so having them cut off left me in tears 😭
Sometimes, life hands us situations that feel impossible to bear, but it’s okay to grieve and to share our emotions.
Today has been imcredibly tough
Thank you for being here with me through this journey. 💔
Seeing our community grow makes me so happy and I can’t wait to hear from you all so please say 👋 in the comments 🫶
PS - I called the normal number for my local fire service and explained the situation to them. As I am housebound they told me the call needs to be logged as an emergency and I had to call 999.
❗️If you have a non emergency situation please don’t call out an emergency service unless it is absolutely necessary ❗️
Friday 14th June 2024 will be a day I remember for the rest of my life as it is the day we got to see Taylor Swift The Eras Tour live at Anfield. This day was months in the making for us. For me, it meant lots of rest in the hope that I could enjoy the day with as little pain as possible. My Daughter Becks had been counting down the minutes, she had been thinking about her outfit for a year, and she knew exactly what she wanted down to the makeup look and body glitter. Luckily we had gone to Anfield a few days early so that she could get all the Merch she wanted as she did not miss out on anything, she spent just under £200 in less than 5 minutes. Seeing the crowds trying to get into the store that night we knew we made the right decision. Our day started early, I made a silly mistake, I left it to the day of the concert to dye my hair and cover up the millions of grey hairs that made my face look so much older. Luckily I had Becks to dye it for me as it's not something I can do for myself anymore. Our amazing Hairdresser was coming early to cut Becks' hair and blow-dry mine which was one less thing to worry about. I had gone from really long to short as I just couldn't manage it any more and it made such a difference to my confidence. While we started the day early I knew I still had time to rest if I needed it. I had prepped my body on the run-up to this night by resting lots and reducing any adrenaline spikes, while I felt a little tired I was adamant that nothing was going to ruin this for us.
What was I going to wear? While I hadn't planned my outfit, I had bought a few new pieces as options. All day, I had been experiencing awful cramping pains that I was just going to ignore because nothing could ruin today. The first outfit I tried was a long tulle skirt in a beautiful light almost a mint shade of green to go with this Merino wool jumper I had splurged on from Abercrombie & Fitch it was just the right shade to coordinate not colour block. While it was an option everything was coming down to the weather. Becks had been planning her outfit since we confirmed the tickets in 2023. She wanted a denim jacket with lots of sparkles. I went a bit crazy with the sparkle order just to make sure that she had more than enough to do everything she wanted, as the jacket didn't arrive in time she had to sit up all night the night before glueing sparkles onto her jacket but it looked amazing. I had ordered a Levis Denim jacket from Depop which became a nightmare. Seller 1 cancelled the order and even after telling the second seller that I wanted this jacket before the 10th of June it wasn't sent on time, this was stress I didn't need. This meant Becks had to take a quick trip into Kirkby town centre the day before and luckily she found a black denim jacket in The British Heart Foundation. On a Facetime call with Becks the week before I got the feeling she didn't love the outfit she had planned so I sent her lots of dress inspo pictures from House of CB and Abercrombie, nothing was going to ruin this day for her. I was going to make sure she got an outfit that she was excited about, she didn't need much encouragement to go shopping. While she was in Abercrombie & Fitch she FaceTimed me from the changing room with the biggest smile on her face, she had fallen in love with the green-tiered maxi dress so she simply had to have it. In the UK you have to dress for the weather and while it had said rain we had very few clouds in the sky so just in case I had a spare jumper and blanket put in my bag. The outfit for the night ended up being green pants that had a green and white block design from River Island and a black flowy top with a black faux leather biker jacket, I did want to change into a white flowy top but changing the black bra was going to cost me too many spoons. After getting Becks to check we had everything a million times we finally left the house. Pack everything just in case Before leaving the house, I make sure to bring everything I might need. The most crucial item is medication; I always carry the next dose with me in case I need it. In addition, I also carry a TENS machine to help manage particularly bad pain. my pain relief As I was getting ready to attendoud music and flashing lights, I knew I needed to bring dark glasses and ear protection. I always keep a blanket scarf rolled uprticular night, I also packed a cardigan to keep me warm. The cold or chills can quickly worsen any night, especially if it's a bad pain night. When I get chills, it feels like my bones are made of ice, no matter how warm it is. I did put a small make-up bag in as I hoped once we got there I could have put a little make-up on but the closest I got to put on make-up was a little lip gloss. With large dark glasses, most of my face was covered anyway.
The Journey to Anfield I had never ventured this far in my wheelchair before, so I was feeling a bit nervous. Luckily, Kirkby has a new train station with flat pavement all the way, making the journey much easier. This was my first time traveling by train in a wheelchair, and I wasn't sure if we needed to inform the station in advance to arrange for a ramp. It's not like they give you a handbook for being a wheelchair user. Fortunately, the new station at Kirkby was fantastic, and the staff were incredibly helpful. Despite my high anxiety, Becks remained cool as a cucumber throughout the journey. Becks suggested getting off at Kirkdale instead of Sandhills, where there are large pavement drops. Getting off at Kirkdale was easy, but getting to Anfield was difficult. There were few lowered kerb stones and many of them were blocked by parked cars, making the 30-minute journey quite challenging. I had to backtrack multiple times and even navigate busy roads in order to find a lowered kerb stone to get back onto the pavement safely.
Goosebumps every time The sight of the bustling crowds heading towards that beautiful fortress of a football stadium fills me with immense pride as a Scouser. The Scouse girls, as always, looked absolutely stunning, but their allure seemed to reach ethereal levels for the Taylor Swift concert. As we neared the stadium, it was the men who drew our attention, men dressed impeccably some donning Travis Kelce jerseys and others adorned in shimmering attire with the most exquisite makeup. However, it was the ladies who truly left us in awe with their breathtaking appearance. Becks had been dreaming of seeing Taylor Swift for years and I wanted her to have the night of her life. With my Princess in love with her new outfit, her make-up look planned out and having had her hair done in the morning by Our Amazing Hairdresser it all came together perfectly, she looked amazing. Getting to record her walking up to Anfield with the jacket she had worked so hard on sparkly in the sun it was a real proud Mum moment.
First Class From the first person we encountered outside the ground, we were blown away by the whole team at Anfield, I can't sing their praises high enough. The first young gentleman did not know the answer to our question so he went away and asked a colleague. I can't stress this enough but there were people everywhere and yet he came back to us and then took us to the gate we needed to go through, amazing. Once we got to the door one member of staff asked for our tickets. Before I left for the stadium I had sent a message to @LFCHelp on X (or Twitter) as I needed a larger bag than was allowed. I disclosed to them what would be in the bag to ask if it was ok. I explained this to them and they asked if they could check it which is what the gentleman on X had said would happen. They then put bag searched tags on my bag and Becks' bag they scanned our tickets and called the lift for us. I can not sing the praises of Liverpool Football Club high enough. This was my first time at Anfield since I got ill, for me this was a huge thing as every other time I had been to Anfield I was able-bodied and I never had to think about a toilet stall large enough to fit my wheelchair in or the best place to go to order at the concessions stand. As someone with a disability, I have had people look at the chair not me, I even had a lady tell me that I was too young to be in a wheelchair. Anfield held so many amazing memories for me and I didn't want to feel any different being there. One gentleman from the team came to escort us to our seats, when we got there he told us where everything was. He was so warm, and welcoming he even came over once the show had ended. We had stayed back a little so I could put a cardigan on before we left and he was asking how our night was, he even told us how amazing Pink was the last time she performed. It was so nice to talk to someone who truly loves their job Our Club and that amazing stadium as much as we do.
Friday 14th June The moment she sang that first note and I saw my baby girl cry tears of joy I was a mess. So I grabbed her hand and we sang along with every word, OK Becks sang every word to every song, towards the end I hit the wall and I couldn't keep my eyes open that is nothing against Taylor Swift she was incredible, my illness just cut me off and I couldn't fight it anymore. I still haven't admitted that to Becks. I had to take another dose of Oramorph towards the end of the concert as this pain was getting a lot more severe, adding that to already doing so much more than my body can handle and I was clocked out. I'm still incredibly proud that I managed to leave the house. Seeing Becks so happy, singing and dancing along to every word, and me giving my all singing along with a bit of wheelchair dancing (the top half moved a bit), I will remember that night for the rest of my life. If you get a chance to see The Eras Tour grab hold of the tickets with both hands, take your dancing shoes and sing along to every single song with wild abandon. Seeing Rebecca so happy made the night even more magical, I don't think she sat down all night, she danced her little legs off. Taylor's songs have played a cathartic role in her life, we have an amazing relationship but sometimes you have to play Taylor Swift on repeat after a bad day or a shitty situation. After a few bad weeks in my own life trust me it helps. As soon as I can I will be sharing more on my YouTube channel, so please make sure you subscribe if you haven't already. I have put lots of Taylor Swift videos up already, please click below to go to my channel, I appreciate it 🫶
Right now Coronavirus and the new variant are all over the news. For people with severe health conditions, we don’t have the luxury of crossing our fingers and hoping everything will be okay.
Maybe it’s worth checking if you need a booster vaccination or to order some masks and antibacterial hand sanitiser
I haven’t written this to alarm anyone or to add to your worries I’m just pointing out who may need to take precautions and if you qualify to have boxes of Rapid Lateral Flow tests sent out to your home address (save a few quid too)
Always do your own research and do not give anyone else the chance to sway your decision as at the end of the day it will be you who is affected by your decision.
I understand that it is difficult to read if you are experiencing Severe ME symptoms so why not try listening to opposing arguments on a podcast or a TED Talk? Most videos on YouTube now have chapters in the video description, this will allow you to only listen to the parts you want to.
If you have been able to arrange to have your vaccinations at home please comment below the local council or borough you live and if it was your GP or 111 you had to call, this might help another sufferer who only has the energy to make a call. We all know that feeling 🫶
Sending you all love and strength
Alisha 🫶
Coronavirus is in the news again whether you believe it or not if you have a severe health issue please take action
Over the past few weeks I have had a difficult time with my illness here is my real-life description of Myalgic Encephalomyelitis symptoms. The pain takes over the whole of my body every single muscle feels like it is screaming in pain with me, and every part feels like it is working against me. Laying on my left side always seems to be the least painful, I must stress that again it is the least painful but every single part of my body still hurts. A medical professional always asks you to give them a score from 1 -10, 1 being the least pain and 10 being the worst pain you have ever experienced, laying on my side brings the pain to a 7.
When I get like this every function hurts, I can't talk noise hurts me physically, and light causes immense pain so my life is spent in a dark room with no sound. The ability to even think seems mismatched, and I cannot think straight. It sounds awful to say but I know how much pain it will take to go the bathroom so I will hold in going for a number 1 for the longest time, this itself will cause additional problems as your body doesn't function well if you hold your urine for such a long time. I can't eat at times like this as the pain leaves me with no appetite but even if I do feel hungry lifting a fork or my arms going up to my mouth is too much pain so I have to rest in between bites as your jaw aches or bringing your food to your mouth becomes too much, it's like a disconnect from your brain to your arm you want your body to do the action but it doesn't happen your arm feels like it gets heavier.
Not eating or drinking leaves your mouth dry which is never a nice feeling or a pleasant taste so I try to position my drinking bottle so I can keep my straw in my mouth leaving me to take in water when I feel able to. I learnt very early on that I needed to use a bottle or cup with a lid as I would spill drink over me or drop cups to the floor. Unfortunately, I do still drop things a lot and the laminate flooring at the side of my bed looks awful.
Medication
I have to take medication every day to help manage my pain. In the mornings I take 40mg of Zomorph this is a slow-release capsule and I take this twice a day 12 hours apart. On top of Zomorph I take Gabapentin, Mefenamic Acid and Propranolol, the Gabapentin helps manage the pain and the propranolol helps me manage my anxiety. At lunchtime, I take Gabapentin, Mefenamic Acid and Propranolol again. On top of my pain medication, I take Omeprazole as I suffer from severe acid reflux. Evenings I take Zomorph 40 mg Mefenamic Acid, Gabapentin, and Propranolol again but we add Amitryipline, Duloxetine and Hydroxyzine. These tablets help me get to sleep and in most cases stay asleep as I can get very itchy with extremely severe hip and pelvic pain, being itchy and not having the ability to itch is torture within itself but when I am really bad I just do not have enough energy to scratch, I do have an extremely large scratching tool which is useful at times but a lot of the time I use controlled breathing and the power of my mind, sounds silly but it helps. I must stress that this does not take the itch away but focusing my mind to stop me scratching the itch can work for me. I also have Oramorph for breakthrough pain.
One thing I learnt early with this illness is to try to do the minimum on regular tasks so I can conserve energy for things I enjoy doing, this could be watching tv with Graham when he gets home from work or giving Alfie a butt scratch which makes his little tail wag with happiness. One of the first things I bought was walking sticks when I was first diagnosed I found walking extremely tiring so using a stick helped me maintain a little energy as the sticks helped keep me upright. As this later led to using crutches and then buying a wheelchair I was still able to spend time with my family. I felt self-conscious and worried about other people's options in the beginning, learn from my mistake please don't ever be afraid of investing in something that will make a difference in your life if it helps you then it doesn't matter what anyone else thinks.
Technology
Using crutches or a wheelchair within my home meant I needed to make changes in doing the simplest things like putting on the lights as using crutches within your home needs light to see where you are going as a crutch slipping on something wet could mean a fall which is the last thing you want. So I invested in Philips Hue lights within our hall lamp downstairs and on the lamp in the hall outside our bedroom as well as our bedside lights. So with the help of Siri on my phone or Alexa throughout the house, I can now turn on our lights using my voice. I can also set the lights to come on at a certain time or sunset, this helps with security too as this is something that worries me a lot. Our central heating and water control was in the kitchen when I got ill so if I was home alone I would have to go downstairs to put on hot water for a shower or to turn on our heating. So we had the Nest system fitted so now I can control the heating or water on my phone or use Alexa or Siri voice control. Upgrading technology at home made a huge difference to me mentally as it has helped me stay independent even if it is just to turn a light on myself. It may not seem a lot to many but repetitive actions like putting on a light or turning it off when you leave a room means stretching from my chair or having to balance one crutch if I am using my crutches using technology means that I can conserve that energy to do something that makes me feel a little more like me even if it is to watch a rerun of "not going out" with my Hubby.
Essentials
For safety, my occupational therapist insisted on having a second bannister installed onour stairs. This was referred by The ME Team at Broadgreen Hospital, the therapist spent a long time with me going over the things I do and how I could stay safe while conserving energy and depending on my home they may refer other things. I admit that I pushed back on a lot of things as it made me realise how ill I am and that was difficult to deal with in the beginning. From my bed I wanted to be able to be sat up straight or propped up to watch TV or read a book so they arranged to have an adjustable back rest to be delivered to me. I also had a mattress sent to me which helps relieve pressure points this gave the additional benefit of not having to push up from a sitting position ( I hope that is understandable, it means that when I put my feet on the floor they are in a natural position as I am not too far down as the bed is the right height now ). As my bed frame is metal I use them for support when I need to go to my bathroom within the bathroom they arranged to have a toilet support so I did not have to rely on the sink for support when I stood up from the toilet. The next thing they arranged was to have a stool for the shower, I can not recommend this enough, even if you do not think you need it and you get tired as the day goes on having that place to sit while I get clean makes a huge difference.
Spoons
If you haven't already read the spoon theory here is a link https://www.youtube.com/c/christinemiserandino. Christine was able to put into words what so many of us tried to say. While you may not think that you need a lot of things or adjustments to live life with ME or any other illness that makes you exhausted please speak to your GP or your ME Dr in some cases you can even refer yourself to your local council. If having a shower takes 4 ( just an example ) spoons, having a shower sitting down on a shower stool might only take 2 spoons or not having to go downstairs to put the heating on would save you that spoon, not putting lights on when you go into a room or when you leave the room would again save you those spoons. All of this would save you energy throughout the day allowing you to do something you want to do, this alone could make a huge difference to your mental health. Living with any illness is hard when I first got ill I went through some extremely dark days as this illness was taking everything from me and the worse I got the more it took. I went from a Mum who was working full time, going to the gym, and being able to spend time with my family. At the weekend we had amazing friends and a fantastic social life having that all taken away, I even needed help to go to the bathroom as I couldn't do anything for myself. The more I pushed against it the worse I got I would be alone all day in a dark room in immense pain all day every day, I missed out on so much and I didn't want to live like that.
Topping up the Dopamine and serotonin tanks
Now I survive and I do everything I can to help save even half a spoon to do something on my terms which means that I can FaceTime Becks ( sometimes I don't even talk I just listen to her ) even if it is a cuddle with Alfie but being able to do that after a bad day or week makes a huge difference to my mental health, I look at it like topping up the Dopamine and Serotonin tanks. This illness has no cure and you can try to fight it with everything you have but it will win, I know that from experience. So do all you can to accept this illness on your terms, invest in anything which will make a difference to the energy you use, ask for help from your GP and work with your local ME team. I have listed some of the items that I have purchased which make a difference to me if you need help please email me I am always available to help, I may not get back to you straight away but I will get back to you.
GlamSticks
Knowing that I needed crutches to get about I searched online unable to find something different to normal hospital crutches. I came across Glamsticks after seeing an Instagram post I think, thinking back I remember that a celebrity had used sparkly crutches at an award show and mentioned them in an interview. So I did a bit of research and found out more about the company. I emailed them to ask if they would just do all black for me and they really impressed me from the start. Since then, I have bought my crushes as well as a walking stick and 9 years later they still look amazing. The link is below if you have something in mind ask them as they are so accommodating.
diamonds bling diamante! Black With The Middle And Top Section Covered In Sparking Clear Diamante. Ossenberg Open or Closed Cuff Crutches.
I hope that this is helpful in some way. I have also done a video recently talking about the sorts of things I keep in my bags so they are ready to go or grab in an emergency , Click to see What's in my Bag
Click here to see the full post on my website
Over the past few weeks I have had a difficult time with my illness here is my real-life description of Myalgic Encephalomyelitis symptoms.
Why its so important for us all to come together to make a difference.
Did you know that - Woman Suffer more from Myalgic Encephalomyelitis
What about this - The most common active co-occurring condition was irritable bowel syndrome, with clinical depression, fibromyalgia, anaemia and hypothyroidism also featuring prominently.
"Sonya Chowdhury, chief executive of Action for M.E. and chair of the management group of the study" asks for us to join in -
We still need more to join us, so if you are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME at
www.decodeme.org.uk/portal
I’m asking for your help 🫶 Living with Myalgic Encephalomyelitis has meant that every single day is spent in my home and I really want to change that. I haven’t seen my family or attended nights out with friends for many years now. I have missed weddings, funerals, births, 18th birthdays, 21st birthdays. I have cousins children that I have never even met and seeing them turn older every year breaks my heart. I want 2023 to be the year that changes so please I beg you to help me in any way you can 🙏🏻 #helpme #gofundme #disabled #makeachange #mywish #myalgicencephalomyelitis #pwME https://www.instagram.com/p/CpxfTfQM2EZ/?igshid=NGJjMDIxMWI=
I ask for your help & support. Below is the first video of 2023 and it's a disaster. All I ask is for you to watch, like, comment and subscribe 🫶 #youtube #youtubechannel #disaster #funnyvideos #itsfunnynowbutitwasntthen https://youtu.be/L-0BME7qBUs https://www.instagram.com/p/CpprnlxsrSk/?igshid=NGJjMDIxMWI=
Today my Beautiful Princess turns 23 🥳🥳 Words can’t describe how proud I am of you and all you have accomplished so far in your life. Today I will miss you so much but just knowing you are doing something you truly love makes it a little easier. I hope you have the most amazing day full of love and surprises 🥳🫶🥳🫶🥰🫶 🥰ps I tried to send a colin the caterpillar cake but they are collection only , sorry 😢 https://www.instagram.com/p/CpkJiwqsIf_/?igshid=NGJjMDIxMWI=
How did I forget that this was on today 😮 This series makes me so happy 🫶#themandalorian #lovegrogu #grogu https://www.instagram.com/p/Cph87JAspHu/?igshid=NGJjMDIxMWI=
