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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

 

Northern Blog Awards – I won!!

Last weekend Timm and I went to Manchester as I had been nominated and shortlisted for the Disability and Chronic Illness best blog. I was totally honoured and really pleased to be shortlisted for the second year running and though I didn’t expect to win, we went along to hang out with some amazing bloggers and have a night out!

And so it was a total shock to actually win!!! 

Northern blog awards disability chronic illness

It was a wonderful night and the first award I have ever won so it is so hugely appreciated and I was a little overwhelmed.

Northern blog awards

Take a look at a little video of the evening here 

Huge thanks to everyone who voted and to the Northern Blog Awards.

✌🏽&❤️

Sam x

Chronic illness and guilt – when we can, we do

I got a message from someone on twitter today from a mum who is facing stoma surgery.

“You have made a difference. You made me feel ok about stoma surgery, you help me to remember I’m not the only one feeling like this. These school holidays are breaking my heart, I feel so guilty for not doing things with the kids. Thank you for reminding me I’m not alone xx”

I responded telling them that today I’m in bed as all my kids are on computers and though I feel bad about this, I remind myself that when I can, I do.

It struck me that this is a good motto for anyone with chronic illness who is feeling guilty.

 

There is so much guilt in living with chronic illness or disability, it’s wrong, it’s unhelpful and it’s crap but almost everyone I speak to has had feelings of guilt at some time in their lives.

Guilt that they’re letting others down, that they’re not good enough parents, partners or friends. Guilt that they don’t pull their weight with work, guilt for taking time off. Guilt that their houses aren’t tidy enough, their dogs aren’t walked enough. Guilt that they sometimes eat fast food as they’re too tired to cook. Guilt that their kids have to care for them when they want to be caring for the kids. Guilt that family days out get cancelled or become about their illness rather than the fun of it.

Its easy for me to say that it needs to stop, that these things we feel bad about are out of our control and that guilt doesn’t help anyone. But I’d be a hypocrite. Because I feel all these things too.

But I do remind myself that when I can, I do.

When I can take my kids out for the day I do. Yes, it’s sometimes to the cinema as I know I’m not strong enough for a more physical day but I do.

When I can, I work hard, I put my everything into careers that I love.

When I can, my house is clean and tidy (and when I can’t, I hire a cleaner!!)

When I can, I see friends, I think about others, I’m there for them.

Life can be tough, but remember…

When we can, we do.

 

✌🏽& ❤️

Sam xx

Should I be honest when you ask me if I’m ok?

For the longest time, when someone asks me how I’m doing, I said “fine thanks!” It’s bright, breezy and if we are honest, what most people want to hear.  

Lots of people I know in the real world read this blog, and so when I see them, I think they feel they have to ask after my health. Being British and having the polite factor drummed into me, I respond with the usual answers of “good, how are you?” “Fine, thank you” and “not too bad!”.  

Sometimes I see the confusion in their faces and realise that they’ve probably just read a heart wrenching description of my mental health and that I shat myself that morning. (Oh the joys of being an oversharing Blogger!) 


It’s a worry when you have a chronic illness that you are going to become too much for those around you, that it must be hard that you are always ailing with something.  I worry that people will get bored of me and my illness, that they wish I’d just be better and stop banging on about it! 

I also feel pressure to be sunny and positive, I think sometimes people expect it of me because of writing this blog. I feel I have to be a shiny, happy person and not talk about all the many negatives. 

It got me thinking about why I say “fine” when I’m anything but fine. And I think some of it is embarrassment, some is habit and some is my issue of opening up to people unless it’s in the written word or if I’m standing in front of an audience! Yes, I realise that’s quite fucked up. 

So I thought I would start trying to be honest when I’m asked how I am. The results have varied! Most people seem taken aback when I say “I’m not great to be honest, I’m back and forth to the hospital and it’s really getting me down” I think it shocks them to get a genuine response to an everyday, casual question. 

When this happens I feel a bit embarrassed and that I’m flaunting some unwritten rule that I should have a stiff upper lip, nod and enquirer how they are doing without actually wanting to know the answer. 

But I’ve also had some great responses, from those who are asking because they care. In that fleeting moment where I tell them that I’m struggling and they reach out, touch my shoulder, tell me that they’re there for me if I need anything. Those interactions feel so real and genuine and human. 

So you’ve been warned. I’m going to try and be honest from now on. If you don’t want to know, don’t ask! 
Sam xx 

Working and chronic illness

For the past three years since I started on this whole surgery journey and things took such a toll, I have been self employed. I have been a freelance writer that’s funded the growth of this blog. I’ve also been extremely supported by my husband, both emotionally and financially. As a self employed person, when you don’t work, you don’t get paid, therefore for the 5 surgeries, subsequent recoveries and hospital stays, without the support of Timm, we couldn’t have afforded to live. 

I applied for PIP, asking for support and was flatly refused. The process was so stressful that I couldn’t even bring myself to appeal. It was really difficult, embarrassing and pretty humiliating, so to then get the response that I scored ZERO was heartbreaking.  That’s right, the PIP folk say I have no extra needs than anyone else. I felt like emptying my bag on their desk and asking them what needs they then had…

The fact I have a life long chronic illness meant nothing, the pain, joint problems, fatigue, anxiety, ostomy, dependency on my husband, the raw bleeding skin, ulcers, the leaks, the planning it takes to leave the house, the dietary issues, the exhaustion, the medication, all of it meant nothing and they said I wasn’t entitled to a thing.  This meant money has been tight and till very recently, I just didn’t feel capable of taking on any other work. 

But now I have a new job for Scope as the digital community officer and I LOVE IT! But the reality is that I can only do this job because they support me in working from home.  So how’s it going? Well, I love the job! Working full time is a huge shock to the system and it’s taking its toll on me. 

I finish work and I’m so thoroughly shattered that I’m in bed by 7pm!  On bad days (which has been every day this week) I have used my lunch hour to sleep.  I’m still figuring it all out but I’m sure I will get there. Timm has had to take up a much bigger role in childcare and running the house as I simply can’t do it all. 

It’s a lot to take on but I’m happy I have done it, I almost feel like this job is part of my recovery process. It is helping my self esteem and confidence massively and reducing my feelings of guilt that have plagued me for years of illness where I’ve felt I had to rely almost entirely on Timm. 

Working from home is ideal for me, I couldn’t cope with working in an office. I still have leaks and stoma issues and the privacy of working from home means the embarrassment factor is reduced hugely and the logistics of dealing my bag is so much easier here.  It also means that on a very bad day I don’t need to worry too much about my physical appearance. When I’m struggling, it’s hard enough just to get up in the morning let alone having to make myself presentable for others! 

Emotionally, it’s been a rollercoaster but I’m nearly  a month in and I’m feeling lots more confident.  My anxiety feels more under control and my self esteem is really boosted. After so long of needing my husband to provide for us all, it feels amazing to be a breadwinner! 

This is obviously only my experience, everyone is different and I don’t judge people who don’t or can’t work or work out of the home.  I feel really lucky in finding this opportunity that works for me but I know working from home just isn’t an option for some people. 

So my top tips for working with chronic illness? This is what has worked for me:

Seek out opportunities, they are out there even if they’re few and far between and it might be a struggle. 

Ask for support whilst looking for work. The government website is a good place to start. You could try talking to a Disability Employment Officer

Once you have a job, speak to your employer about your needs.  Whatever your physical or learning disability, you have a right to equality, fairness, respect and understanding at your workplace  under the Equality Act 2010. 

Listen to your body, what does it need? Right now I need rest and comfort and so I have a hot water bottle to hand, plenty of fluids and I do power nap at lunch which sets me up for a great afternoon working. Only you know what you need. 

You can’t do everything.  I did the lions share of housework, but now I work full time, I ask for help from my husband and kids and I got a cleaner. Yes, a cleaner is a luxury, but it is the best £20 a week I spend as it reduces my work load and stress levels. I know it’s not affordable for everyone but I would rather go without other luxuries and use that money for something that really helps me out. 

Prioritise your time. Adding work into your life means other things will fall by the wayside.  Prioritise the important stuff. 

Be open with your employer and let them know your limitations. Offer solutions to the issues you may face and ask for help. 

Rest when you need to. I have fatigue, so I know that when I’m not working, rest is a fuel for my health. 

If you don’t know it, search it. We all have access to all the information in the world! There’s a ton of info and support out there, if you have thought of the question, it’s likely that others have too. Use the internet for research and help. 

If you’re interested in my new role, you can take a look at the Scope Community.  Register and join in on hundreds of posts, questions and comments and a community of disabled people and the families and carers of disabled people now! 
Sam x 

Finding out who your friends are

Chronic illness has a lot of downsides. A LOT!  Apart from the physical effects, the surgeries, the time in hospital and the emotional and mental effects, it can massively effect your social life and friendships. 
I think it really does show who your friends are though.  I get that my illness has gone on for a long time, I know this more than anyone. I know it must be hard to be friends with me at times, I’m not the worlds most reliable person after all. I cancel on plans at the last minute and there’s times where I am so unwell that I can’t be there for the people I care about. 

But it makes me really sad that there are friends who sometimes seem to forget about me.  Maybe they are fair weather friends, only there when I have something to give back, only there when I am able to be fun and go out.  Or maybe they just don’t know what to say to me? 

I know it’s not just me too. I get a lot of messages from readers who are facing the same thing and are unsure of how to deal with it which is why I decided to write this post.  I don’t want to sound self obsessed or bitchy but it is definitely an issue for people with long term health conditions. 

Scope did a poll where they found that two thirds of people feel awkward around disability. Perhaps the same applies to illness?  Maybe people are worried about the right or wrong thing to say? Maybe they’re concerned about offending? 

I understand that feeling of being scared to say the wrong thing. Of worrying about sticking your foot in it and saying something that may upset the other person. But dude, just do it. Send a message, pick up the phone, arrange a visit. 

I try to see the best in others, I think it’s better to assume the best in people rather than thinking the worst and so I try and think of reasons behind this behaviour.  Perhaps they’re just really busy, they have their own shit to be dealing with.  It’s easy to slip your mind when your life and struggles take over.  Maybe they don’t know what to say or they are having their own issues? 

I have some amazing friends who I couldn’t cope without, who are always there for me.  They put themselves out to come and look after me, cook and clean when I can’t.  They visit, call and text and those people I am truly grateful to. 

I know it’s tough being my friend.  I know there are these vast time periods when I am so ill that I can give you nothing back. Believe me when I tell you how sorry I am that there are times when our friendship is one way, I’m sorry that sometimes I need more than I can give.  But know that as broken as I may be, I am loyal and loving and kind and when my stupid, bloody illness allows, I will be there for you too. 

Sam xx 

Please don’t stop inviting me

When you have a chronic illness, one of the things that cause guilt and stress is letting people down, I hate that I am sometimes so slack and have to say no to plans, often at the last minute.  To anyone I let down, I am sorry.

But please don’t stop inviting me…

I know it is frustrating when I call (or more likely do the cowardly text) at the last minute, I am sure you look down at your phone and roll your eyes and think ‘here we go again!’ I am sorry that I cancel on our plans, but I swear, in the cheesiest of lines, it’s not you, it’s me.

Whether it is last minute pain, fatigue or anxiety, whether it is physical or mental, I know that it can seem to you that I must not care.  I know that you may analyse my excuse and logically come up with an outcome where I could make it if I really wanted to.   I know that it makes you sad, or angry, or fed up.

But please don’t stop inviting me.

sam cleasby so bad ass IBD blogger and writer

I know you have been there for me and come to my events, my parties, my coffee breaks.  You make the effort to visit me and be an amazing friend.  You put yourself out and very rarely cancel and it must be so frustrating to have a friend who doesn’t return the favour.

It must be quite difficult having me as a friend, I don’t have a normal level of consistency in my life, it is one thing or another with my health and if it isn’t a physical thing, years of living with these issues have made me mad as a bag of frogs.

But please don’t stop inviting me.

I am sorry for that time I missed your child’s birthday party, I am sorry I didn’t come on your planned trek to the countryside, I am sorry I bailed on your last party, I am sorry I cancelled our brunch date, I apologise for saying I would definitely come to that yoga class with you then abandoning you to do it alone.

I feel terrible that I didn’t call you more regularly when my problems seem to fill my whole head space, it makes me sad to know that I am not the best friend in the world, I’m sorry I wasn’t there for you.

But please don’t stop inviting me.

I know I am sometimes slack and I cancel on you.  This illness of mine sometimes makes me selfish and clouds out everything else, but know this.  I may not be present, but you are always in my thoughts, I might miss your event but I love you dearly, I bailed on your party but I am loyal, caring and my friends mean everything to me.

Even when I don’t make it to your events, please know how much it means to be invited.  Your offers mean everything even if I know I can’t make it.  Thank you for making me feel normal, for not being put off by my illness, my cancelations, my issues.

Please don’t stop inviting me.

sam cleasby so bad ass IBD blogger and writer

It takes a very special person to be friends with someone with a chronic, life long illness.  You lose friends and family members along the way when you are ill, it is a time where you find out who is really there for you.  Some people can’t hack it, they walk away and don’t want to be part of your life because it isn’t all sweetness and light.  These fair-weather friends are only there for the good times, when the shit hits the bedpan, they are out of here!!!

But the people who stay are true gems, and I appreciate the friends and family who have stuck by my side throughout the terrible lows and been there to cheer for the amazing highs.

Thank you to my amazing friends.

Thank you for never stopping inviting me.

 

Sam xxx

Things I’d like you to know from a sick person

1. I don’t need your sympathy but I do need your understanding.

2. Don’t be embarrassed. If you have a question, just ask!

3. It’s not you, it’s me. Please be patient when I can’t make events/cancel last minute/don’t return your calls.

4. Needing help and support is not easy to ask for, but know I appreciate every offer.

5. Don’t be afraid. Sometimes my treatment is scary and unknown to you. It’s ok to not know what I’m going through.

ibd hospital jpouch canula medications

6. Don’t be a stranger! Visits, texts, phone calls are all welcome.

7. Your children’s questions and comments are great. Don’t shush them when they point and ask, kids don’t bullshit.

8. Sometimes I don’t want to talk about it. Don’t be offended if I answer quickly and then change the subject.

9. Sometimes I do want to talk about it. Sorry if I bore your ear off with a rant. I don’t need answers, I just need to vent.

10. Sometimes it takes the strength and stamina of a mountain climber to just do the things that come normally to you.

ulcerative colitis disability sam cleasby IBD blogger

11. Hospitals hate flowers. But I don’t! If you want to send me them, wait till I’m home.  Then I’ll cherish them.

12. I appreciate that being my friend/partner/colleague is sometimes a bit tough. Thank you for being part of my life.

13. Sometimes I feel really sorry for myself and my head is in a whirl. Sorry for the times I hide away.

14. When you send me links to things about my illness, it means a lot to know you’re trying to understand and help.

15. It’s not all about me! Please don’t worry that your struggles aren’t “as bad” as mine. I want to know what you’re going through and help when I can.

sam cleasby sheffield blogger

16. Sometimes my meds make me fat/thin/sleepy/manic/sad/weird/angry. Don’t worry.

17. I have good days and bad. Often my good days lead to bad days because I push myself too hard so I get to do nice things.

18. I’m sometimes a bad friend because I lock myself away and I’m not there for you. I’m sorry.

19. My husband and kids are going through this too. Don’t forget them. (Timm always accepts trips to the pub)

sam cleasby ibd and children

20. This is a lifelong thing with no cure. If you can’t take the heat, get the fuck out of my kitchen.

 

Sam xx

Medical ID app

I found out about this app on the iPhone recently and thought it would be of interest to you all. 

It’s called Medical ID and allows access to some vital information on your phone in an emergency situation. It’s free, simple and easy to set up and so I thought I’d talk you through the set up process. 

Go to the Health app on your iPhone.   

medical id app apps to help with disability Go to Medical ID in the bottom right hand corner.   

medical id app apps to help with disability 
Click on that and fill in your information starting with name and date of birth and medical conditions as well as medical notes.  As I have a jpouch, I added in a note explaining that rectal exams must be taken with extreme care. 

 medical id app 
You can then add your emergency contacts (you can add more than one), blood type and if you are a donor. 

 medical id app

Then save the information and it can be found if necessary on your locked screen by pressing emergency and then Medical ID. 

  medical id app  

 medical id app apps to help with disability 
 
It takes a couple of minutes but allows you a little piece of mind that in an emergency, your medical needs are right there for the people who may need them. 

Hope this helps! 
Sam x 

  

10 GREAT things about life with Inflammatory Bowel Disease

We all know that life with any chronic, lifelong illness sucks,  when that illness is Inflammatory Bowel Disease in the form of Ulcerative Colitis or Crohn’s Disease, it is shitty! (Pun definitely intended).  I am as guilty as everyone else in writing about all the negative aspects of this, I have spent two years doing just that, but I thought it time to write about the great things…

 

1. Regular new underwear.  Well, when you end up abandoning pants in sanitary bins because you shit yourself, you have to replenish the stock! Make it some nice ones.

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

 

2. You know more about the workings of the digestive system than most people.  Including doctors.

ulcerative-colitis digestive system crohns ibd

 

 

3. You sound like you’re carrying maracas in your bag due to all the meds rattling around.  Make the most of it and shimmy as you walk.

chronic illness funny

 

4.  You become the Poo Oracle of all your friends.  Revel in the power of knowing about all your mates poo stories.

poo taboo everybody poos so bad ass sam cleasby

 

 

5. You know your way around your local hospital and so never get lost.  You have been in most wards at some point, you could draw a map!

sam cleasby author so bad ass sheffield

 

6. You have an excellent excuse to eat crap, beige food when you are in the mood.  Yes, you need a mcdonalds, everything in there is on the low residue diet!

junk food and ibd

 

 

7. You have a sense of humour.  Sometimes sick, sometimes inappropriate but when you have been through so much, you have to learn to laugh or you would cry.

ibd funny poo jokes lol

 

8. People get so used to you looking rough that when you are well and scrub up, you look amazing and people comment.

too ugly for love ostomy bag sam cleasby so bad ass

 

9. You have the ability to teach those around you.  About illness, invisible disability, compassion, love and positivity.  Use it.

ibd periods menstruation sam cleasby so bad ass blog

 

10. You know that life is precious.  You have been through hell and are still standing! You know that no matter how tough life is, it is ALWAYS better than the alternative.

sam cleasby mum parent blogger

 

 

Sam x