What I wish people understand

I wish people understood that I live my life in pretty much constant pain, that I survive by popping painkillers, high strength codiene every day.

I wish people understood that each day feels like an uphill struggle, that having a jangling, aching pain drags you down and that there are times when it’s just all too much.

I wish people understood the sheer amount of effort it takes to do normal tasks and the frustration that I can’t do what I want.

That when I do the things others do, it takes planning and supreme gumption and the knowledge that it will wipe me out and take away my ability to do other things.

That when you ask how I’m doing, it’s hard to know how to answer. The answer is generally “pretty shit” but I don’t want to bring everyone else down.

I wish people understood just how tough it is to work, that I push myself daily to get through the day when the pain, fatigue and brain fog make me want to crawl into a duvet and cry.

That to work means cutting back on pain meds and weighing up the benefits of pain relief with the foggy head, inability to drive and sleepiness and I have to make that decision every day.

I wish people understood fatigue. I’m not just “a bit tired”, it feels like a mix of the worst hangover and feeling like I’ve run a marathon. Every cell in my body is screaming at me to stop and lie down and rest but life still has to carry on.

I wish people knew I’m not lazy.

I wish people knew the guilt I carry every day, that my illness makes me not a good enough mum, not a good enough wife, friend, employee, human.

That I worry constantly that it will all get too much for those around me, that I won’t be able to do my job, that friends will get fed up of me cancelling on them, that Timm will get sick of looking after me.

I wish people understood that no matter how many surgeries I have, it never gets easier, it gets worse. It’s scarier every time, knowledge isn’t always a good thing.

I wish people understood just how fed up I am of being ill, being in pain, being tired.

I wish people understood.

✌🏽& ❤️

Sam xx

Cineworld Sheffield VIP experience

Timm and I have Cineworld unlimited cards, they allow you unlimited access to Cineworld screenings and costs £17.90 a month (it’s more for London West End) and you have to sign up for a 12 month contract.

Its a total luxury but we love films and since I got ill we don’t go out out much but even when I’m really poorly I can usually manage a cinema trip.

On top of the unlimited film viewing you get 10% off drinks and snacks and that goes up to 25% off if you have the card for more than one year. You also get discounts at a range of restaurants.

If you’re interested in signing up follow this link and when you register, use the recommend a friend code RAF-99GK-64PW-79JR-31PZ, you’ll get one free month and so will I! Then you can get your own link and anyone signing up with that will get the same deal with you getting more free months.   This code will only work 12 times so if you’re interested, then click the link and use the code above sooner rather than later!

The other good thing is you get money off for 3D, 4D and the VIP tickets, so we thought we’d try the VIP experience out.

Its usually £29 per person, but with the unlimited card it is £19. For this you get to go to the VIP lounge 45 minutes before the film starts and you get unlimited food (pasta, pizzas, salads) cinema snacks (hot dogs, nachos, popcorn) desserts (cakes, frozen yoghurt) and soft and hot drinks!

Cineworld vip Sheffield Desserts

The seats are lazy boys and fully recline and are so comfortable and you can get as many drinks and snacks throughout the film.

Its not cheap I know but for a special treat it was fab! Timm and I went to see Bohemian Rhapsody tonight in the VIP cinema and we loved it. The film was AMAZING and I’d highly recommend it.

The food was really nice, we wondered whether it would be a bit lunchroom but it  fresh and was very tasty. There was the options of soup, potatoes, pasta, sweet and sour chicken, pizza, garlic bread and salads and it was unlimited so you could fill your boots!

Soft drinks including all the normal pop, squash, bottled water and hot drinks were also unlimited. There is a full bar too but that isn’t included, we didn’t have any alcohol so I can’t comment on bar prices.

There is a dessert bar with a variety of cakes and a frozen yoghurt machine with lots of toppings, also you could get hot dogs, nachos and popcorn.

We would have definitely spent more than £19 each if we’d have gone for dinner and the cinema and even at £29, you can still get your money’s worth.

Cineworld vip Sheffield

The cinema had 40 seats, all were individual lazy boys that reclined and had leg rests that raised so you could get really comfortable. When I’m in pain, I’m often seen in the pictures with a neck pillow, blanket and sometimes my hot water bottle! But none of these were needed here, they were super comfy and I could have fallen asleep on them! You have tons of leg room and a little tray to keep drinks and snacks on.

It was a really enjoyable experience and though I wouldn’t do it all the time, for a special treat or date night it was great fun and really made it quite special so I’d recommend it.

This isn’t a sponsored post in any way, I just thought I’d share our experiences. If cinemas can be tough for you with chronic illness or pain, this was definitely a lovely treat, the chairs alone made it for me. I was in quite a bit of pain tonight but being able to move the chair to suit me and curl up was a huge bonus.

Let me know what you think! Have you tried it? Would you give it a go? What do you think of the price?

✌🏽 & ❤️

Sam xx

Cleaning your house when you have a chronic illness

When you’re in a time of flaring, when your illness is overwhelming you, when fatigue and brain fog is kicking your arse, cleaning your house is probably the last thing on your mind. And as much as house cleaning is not something to prioritise over your health, things still need doing and sometimes having a messy house actually becomes an additional stress to your life and so I got thinking about my top tips.

1. Get help

Last year we took on a cleaner, now I know this is a luxury that many people can’t afford but for some it is something that could be considered. We have a cleaner once a week for two hours and it costs £20 a week, when I started working, it was my first decision as I knew I couldn’t do it all. Look through your finances and see if it could be a possibility as it is worth it’s weight in gold to me. A friend of mine uses part of her disability benefits to fund a cleaner as it is an important part of her health and well-being.

If you can’t afford a cleaner, then is there anyone you can fall back on when times are tough? A partner, friend, parent, child? It’s not easy to ask for help, but you can’t do it all all of the time and it’s ok to need support.

Even young kids can be taught to help out and it’s good for them to learn new skills and independence, whether it’s balling socks or filling the dishwasher, every little helps!

Child at sink washing pots chronic illness and housekeeping

2 Plan for your bad days

If you know that on your bad days you can’t do anything then think of your plan for those days.

If on your bad days you know you can barely get out of bed then what could you put in place for those days? I keep a stack of paper plates so if I can’t manage, we can eat off those and throw them in the bin. Is it a perfect answer? No! But it takes off a little pressure and I’m good with that.

3 Make it easy

What’s the easiest way to do a chore? Baby wipes have saved my skin more times than I can remember, they wipe down sides, clean a bathroom sink, wipe scuffs off walls and clean up spills. It doesn’t have to be perfect, it just needs to be easy!

4 Keep it organised

Life is easier if you know where stuff is, and it also then makes it easier to delagate to other people if it’s clear where things are kept and where your cleaning supplies are.

Hoover on a blue carpet cleaning the house with a disability chronic illness

5 Declutter – get rid of the stuff you don’t need!

Do you use it or love it? If not, consider whether you need to keep it! Our lives become more and more filled with stuff and that can be overwhelming.

In Marie Kondo’s book The Magic art of tidying she says “The question of what you want to own is actually the question of how you want to live your life. Keep only those things that speak to your heart. Then take the plunge and discard all the rest. By doing this, you can reset your life and embark on a new lifestyle.“

6 Accept it

Your health and well-being is more important than an immaculate home. Sometimes we have to accept their are limitations to what we can do and we need to prioritise ourself over whether your kitchen floor gets mopped.

If fatigue or pain means you have limited energy then in my opinion, use that energy on something that makes you feel good! If you have kids, playing a game with them wins over ironing any day! We need joy in our lives so if you only have enough spoons to do one thing, make it something that makes you happy!

I hope this helps, let us know your top tips in the comments

✌🏽 & ❤️

Sam x

Electric hot water bottle review

Last week I saw that Chloe from CPstudentblog was talking about an electric hot water bottle on Twitter and it made me curious and so I went onto amazon and ordered the Bauer electric hot water bottle and thought I would share my thoughts.

Bauer electric hot water bottle

It was £17.42 and because I have Amazon Prime I got free delivery. So it was much more expensive than my usual trusty hot water bottle that was about £5 but I thought it worth a try.

I use a hot water bottle every day, since my last surgery I am in pain every day and heat on my stomach is really helpful with pain relief. I even have one at work so I can have one wherever I am!

Patientinfo says “Heat and ice have been used for many years to treat pain and to reduce swelling, and many people have found them effective. More recently, studies have been done to investigate whether heat and ice really make a difference to healing and the results have been inconclusive. In general, when used sensibly, they are safe treatments which make people feel better and have some effect on pain levels and there are few harms associated with their use.”

I have no contact with the Bauer company and this isn’t sponsored in any way it’s just sharing my experience so it might help others.

This is a plug in device into the mains, it has a charger that sits flat on the floor and is easy to attach to the water bottle. It is a soft touch fabric pillow filled with liquid and has the charging port in the middle. You put it on charge for around 10 minutes and a light on the charger goes off once it is heated up.

The first charge I found the bottle was only warm and felt really disappointed, I put it on to charge again and then it felt really nice and hot. Since then I have only had to charge it the once, I then give it a jiggle and it feels as hot as a normal hot water bottle and lasts for hours.

It has really changed my life and is so great for pain relief and also just to warm your toes if you’re a bit chilly!

The best part for me is that I feel it’s given me back my independence, before I was constantly asking my husband or teenagers to go and fill my bottle for me and I found that upsetting and a bit embarrassing. The guilt of asking your family to care for you is enormous when you have an impairment or chronic illness, even though they say they don’t mind helping, I always feel bad asking.

And so to have this plugged in right next to my bed just gives me a sense of independence that means so much! Knowing that I can plug it in whenever I want, I don’t have to go up and down the stairs, I don’t have to ask others is wonderful. There have been times when I was so sore that I couldn’t manage to go and fill it myself but it was the middle of the night and I didn’t want to wake anyone so I just suffered till morning.

I am a huge fan of anything that gives comfort and independence to people and the electric hot water bottle is certainly doing that for me. I love the easy plug in that most people would be able to manage alone even if you have poor mobility.

So there we go! I would recommend this product if you’re a hot water bottle fan and would go as far as to say that it would be a great present for someone with chronic pain this Christmas!

Its one of the best things I’ve ever bought!

✌🏽& ❤️

Sam x