Two years ago…

Two years ago I started working for Scope as the senior community officer. I saw the job advertised on Twitter and retweeted it saying how I wished I lived in London so I could apply. I got a reply saying that for the right applicant they would consider remote working and so I decided to apply.

At the time I was blogging here and working as a freelance writer for magazines and for the metro and though I enjoyed it, it was hard work always hunting for the next job and pay was low and sporadic. Timm has always been self employed and I had been for the past few years and so the thought of working for someone else was also scary but the idea of a regular monthly wage was a definite plus.

I applied and was thrilled to get an interview but then just after I ended up in hospital having yet another emergency surgery and so the thought kind of went out of my head. We also had a big trip to India planned and I was trying to figure out if I’d be well enough to make it there.

So when I got the phone call offering me the job I was shell shocked. Years of illness had really knocked my confidence and I didn’t think I’d actually get the role. I stuttered a yes, put the phone down and burst into tears, the knowledge that I was still valid as a chronically ill person really hit me. Feeling wanted and needed in the workforce boosted my confidence and I couldn’t wait to take it on.

I started work and the change in working set hours every day was tough at first! But my manager Alex was so kind and supportive that I soon fell in love with my job. I look after Scopes online community and so every day I get to work with disabled people, supporting them, problem solving and I learnt so much about so many impairments, benefits, social and economic issues around disability. It was pretty overwhelming at first but I couldn’t believe my luck and adored my role.

Over past two years with Scope I’ve had 2 big surgeries and had to take quite a bit of time off to recover. I was frightened that they would be annoyed by this, that my health issues would be seen as an inconvenience and would I even possibly lose my job?

But my concerns were unfounded and the support has been phenomenal, mainly due to Alex’s management. He has always been concerned but supportive, sad for me that I was having a tough time but firm in his belief in me and in his support in getting me back to work at the right time for me in a way that I could manage and this helped so much. I felt guilty a lot of the time, feeling like I was letting them down and just sad in myself that I wasn’t fit or well enough to do my job.

Finding a supportive company who understand the value of a disabled worker is difficult, I have worked for other companies who have been awful. When I spoke to one about my need for toilet breaks due to Ulcerative Colitis I was told I needed to manage my time better. I’ve had bosses who phoned me every day I was off sick checking up on me, making me feel like they thought I was faking.

But Scope have been amazing and I can’t sing their praises enough. This year I made the very difficult decision to cut my hours from full time to three days a week and they made it all easy and non-judgmental. They know I work hard, I put my all into work and they appreciate that though my illness has an effect on my life, that it benefits them to have someone who actually understands what their customers are going through.

Two years had gone so quickly and I hope I’ll be there for many years to come! There’s not many people who love their job and I feel so lucky to be in a role I adore, with an amazing team and a company who are fully supportive!

Happy Scope Birthday to me!

✌🏽& ❤️

Sam xx

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

Bella Beat health and fitness tracker

I’ve been trying out the BellaBeat fitness and health tracker for the past few months, you can watch my review on my YouTube channel.

Find Bellabeat on their website for more information or to buy your own.

 

I wasn’t paid for this review but I was gifted the products by the company. I am free to give an honest review and Bellabeat have had no say on how i shared my thoughts or what my review said.

I occasionally work with companies to review products, I only work with companies I trust and who I think have products that you guys would be interested in and I will always let you know if this is the case.

✌🏽 & ❤️

Sam xx

Flu jabs and chronic illness

Just a friendly reminder for anyone with a chronic illness or vulnerable people that it is flu jab time!

Flu jab chronic illness

 

The NHS says:

Flu vaccination is available every year on the NHS to help protect adults and children at risk of flu and its complications.

Flu can be unpleasant, but if you are otherwise healthy it will usually clear up on its own within a week.

However, flu can be more severe in certain people, such as:

  • anyone aged 65 and over
  • pregnant women
  • children and adults with an underlying health condition (such as long-term heart or respiratory disease)
  • children and adults with weakened immune systems

Anyone in these risk groups is more likely to develop potentially serious complications of flu, such as pneumonia (a lung infection), so it’s recommended that they have a flu vaccine every year to help protect them.

Chronic illness flu jab NHS

Ive had flu once and ended up in hospital for a couple of weeks, it was horrific! I’ve never felt so ill in my life. People say all the time “oh I’ve got flu!” The chances are they don’t!

The doctor told me it’s the £10 note test, if you have flu and someone told you there was a tenner on the floor outside your house, you wouldn’t have the energy or inclination to move. Not sure quite how true that is but when I had flu it felt like even my hair hurt. I couldn’t move and even breathing hurt.

I had to call my GP to get on the list as Id been missed off, but now I get an annual letter to go in. It takes a couple of minutes and it’s all done.

If you are unsure whether you should have it or not, get in touch with your GP for more advice.

✌🏽 & ❤️

Sam xx

 

Two shows, one day!

At the beginning of the year I got tickets for Eli and myself to go see Hamilton. And then for my birthday Eli surprised me with tickets for Les Miserables for the matinee on the same day!

Hamilton is their fave show and they know every single word and Les Mis is my go to show, I think I’ve seen the film 30 times but I haven’t ever been to the West End and so yesterday was such a treat.

I have been worried about this day since June and my last surgery, since then I’m in pain every day, I’m taking pain killers all the time and my stomach is agony. Also the fatigue has stepped up (probably because I struggle to sleep much at night). And I have been panicking about whether I would be able to make it.

Les Mis London Chronic Illness

What if I had to let my kid down yet again? What if I couldn’t make it or even worse what if I came and then was too ill to get out to the show? What if I embarrassed them by leaking in the theatre or falling asleep because I’m necking codiene? What if I was the reason they didn’t get to see the thing they’ve been most excited for?!

Mum guilt and panic stepped in and I spent so long worrying, planning on who I could ask to step in my place and take Eli so they didn’t miss out. But I managed to pull myself together and away we went!

Les Miserables is the longest running show in the world and though I’ve seen the film tons of times, seeing it on stage was a whole other experience!! It was amazing, so beautiful and the actors were incredible, we went to the matinee show and I cried, laughed and had the best time! Eli really enjoyed it too and I was so grateful that they’d bought me the tickets, what a brilliant child I have!

Next we headed across London to the Victoria Palace for our second show of the day, Hamilton. And oh my gosh, it was ridiculously amazing! As its Eli’s favourite, they were so excited and it didn’t disappoint. It’s a brilliant story and again the cast were just wonderful!

Hamilton London

One of the things people don’t understand about chronic illness is the amount of balancing and planning that life takes. Getting the balance of pain medication right so that I wasn’t in so much pain that I couldn’t concentrate but not so much medication that I’d be dozy and sleepy. Figuring out what I could eat and drink so that my bag wouldn’t be filling so I’d have to leave the theatre but making sure I didn’t get dehydrated.

Packing a bag for the day that had everything for an ostomy bag change and a change of clothes if I had a leak was tough as I didn’t want a heavy bag I couldn’t carry and also I knew my bags would be checked at the theatre.

The other thing is being aware that a day out like this would completely exhaust me for days afterwards. It’s been a week since we went but I’m still recovering and have had to work from bed all week. One days fun equals a week of exhaustion, pain and fatigue.

But sometimes you have to accept this in order to do the things that make you happy. And I couldn’t have been happier to spend the day with one of my amazing kids. Anyone with more than one child knows that it’s hard to get one on one time with your kids and so having a full day doing something we both love was so special. Eli isn’t having the easiest time but they are such brilliant company and hanging out with such a wonderful, kind, clever, cool and awesome person made the weekend so special!

West End shows aren’t cheap as we all know and I feel very privileged to have been able to go to two shows, but it was such a fantastic experience and I’m so glad we did it. We have already started saving for our next show next year!

If you’d like to know more about accessible theatre, check out Life of Pippa, a brilliant blog you can find here.

✌🏽 & ❤️

Sam xx

Reiki

Reiki is a form of complementary medicine developed in 1922 by Mikao Usui. Since originating in Japan, reiki has been adapted into varying cultural traditions across the world. Reiki practitioners use a technique called palm healing or hands-on healing through which a “universal healing” is said to be transferred through the palms of the practitioner to the patient in order to encourage emotional or physical healing.

Pat Hayward from Angelic Healing got in touch with me a few months ago, we’d met a few years ago on a course and stayed in touch through the power of social media. Pat had been reading about my surgeries and the struggles I was having with anxiety and offered to come and see me to give me a reiki session.

I’ll be honest in saying that I wasn’t entirely sold on the idea of reiki but thought if nothing else then it would be a relaxing experience and so I took her up on her offer.

She came to see me at home and we had a little chat about what was going on and how I was feeling. Pat is a very calming and open person and I felt immediately at ease with her, I found I could open up to her in a way I wouldn’t usually be comfortable with.

She brought a massage table and some crystals and played soothing music as I lay on my back and closed my eyes. She explained that she’d be moving around my body and to relax, and that if I felt uncomfortable to let her know.

As I lay back my mind starting wandering to worries and things I needed to do. I often struggle with massages as I can’t switch off but very quickly I began to relax and my mind cleared.

With my eyes closed I began to see swirling colours coming in and out of view, my body let go and I found myself in a really deep state of relaxation. I watched the colours moving around and wondered to myself why I’d never noticed that the lights in my living room did this with my eyes closed!

Around an hour later, Pat touched me on my arm and told me she had finished, she suggested I take my time in getting up and got me some water.

I felt as if I’d woken from a deep peaceful sleep even though I’d been awake the whole time. As I relaxed back I closed my eyes again expecting to see the lights again but they were gone! No matter how much I tried I couldn’t see the beautiful swirls and that freaked me out a little!!

Pat told me to try and relax for the rest of the day and to drink plenty of water. I couldn’t thank her enough, I can’t remember the last time I felt so at ease, so calm and so rested. She suggested I spent some time with my shoes off and grounding myself by being outdoors with my feet on natural ground.

After thanking her and saying goodbye I went up to the allotment, I took off my sandals and stood with the sun on my face. All of a sudden my stomach gurgled and my ostomy bag completely filled up! It felt like my body expelling everything in one go, not painful at all but almost like I was letting go.

As I said, I wasn’t sure about reiki before hand, I can’t explain any of these feelings or the things I saw. But I can say it was one of the most peaceful and relaxing experiences of my life. I would definitely do it again!

If you are feeling stressed out and wound up, I would recommend trying reiki, it may not be for everyone but for me it felt like a really healing and beautiful experience.

You can get in touch with Pat through her Facebook page to find out more or if you’re not around Sheffield then search for a reputable reiki healer near you.

✌🏽& ❤️

Sam

 

I wasn’t paid for this review, but Pat gave me the session for free. She did not request a review or expect anything in return but it was such a great experience for me that I wanted to share.

I’m on the Disability Power 100 List!

I can’t explain how honoured I feel to be recognised on the Shaw Trust Power 100 list 2018. You can read more here http://www.disabilitypower100.com

The Shaw Trust Power List is an annual publication of the 100 most influential disabled people in the UK. Since its inception four years ago, the publication has gone from strength to strength. Over the years it has allowed Shaw Trust to encourage businesses, employers and other organisations to reflect on opportunities available for disabled people. The list plays a vital role in providing much needed encouragement to the young and talented leaders of tomorrow, allowing them to see that aspiration and ambition can be fulfilled regardless of disability or impairment.

I don’t do any of the blogging, speaking or activism for recognition but to help others. I remember how isolating and lonely it was when I was diagnosed and going through surgeries and treatment and all I ever wanted was to help anyone else feeling like this.

During my darkest times, blogging has helped me to find some light, knowing that I could use my experiences to help others got me through and I am so proud to have been able to support so many people over the past five years.

Disability power list 100 2018

Thank you to every person who has taken the time to read my blog, share it or reach out to me, it’s genuinely an honour and a blessing to be a part of your lives.

A very wise woman once told me that every person has a story and if you are privileged to hear those stories then be grateful and humble that you have that opportunity. And that’s how I feel every time I get a message from a reader.

Life can be short, scary and sometimes it sucks but count your blessings and try to use your time to bring goodness and kindness into the lives of the people around you.

Money, fame, accolade, they’re nice but what is important is love, caring and kindness. It’s what holds the world together.

Thank you so much for being part of my journey.

✌🏽& ❤️

Sam xxx