Happy Friday everyone! We have made it through another week! Who has kids that are breaking up for the Easter holiday today? The boys are spending the first week with their Dad and the second with me, I can’t wait! Today as part of my Spring Cleaning Week I am sharing ten hacks to make cleaning easier for those with chronic illnesses. I hope you find my tips useful and if you have any more, please add them in the comments below so everyone reading this can see them as well.Continue reading
Well, what a start to the week. If you follow me on social media (Instagram, Twitter or Facebook) you will have probably seen that I have been struggling with my Crohn’s Disease and Rheumatoid Arthritis since the start of the new year.
Admitted With a Plan
This morning I had an emergency appointment with my gastroenterologist at Derby Royal Infirmary and she has admitted me to get me sorted out properly! It’s a hard thing to have to do to agree to come in for tests and treatment but I also know just how poorly I’ve been and that it really is the best option right now.
The blog has been fairly hit and miss all month due to me just not being well enough to post. This plays on my mind but I also know that it’s in my best interests to put myself and my children as first priority which is what I’ve been focusing on so I hope you will forgive me. As I’m now stuck in my hospital bed for the majority of the day I thought this would give me some time to once again, write for you all. I’m not sure how long I will be here, my doctor is really good and wants things done as quickly as possible so hopefully my body behaves accordingly now! I thought ‘The Hospital Diaries’ might be interesting for you to read – a chance to see into an admission if you haven’t had one, a patient’s experience first hand and also a description of some of the things that happen.
I am currently on MAU (Medical Assessment Unit) until a bed on gastro becomes available. I’m in a side room which is great as it’s nice and private and I have my own bathroom which can be really convenient when you have a stoma that’s not behaving too well. The nurses, doctor and other ward staff have been absolutely brilliant, they are all lovely and my care here has been brill so far.
The plan at the moment is:
- IV STEROIDS – which I can’t say I am not a little gutted about but I know it’s the best first line of attack short term before the tests get done and we see where we stand and get a long term plan in place
- ABDOMEN X-RAY – this was done this evening and it’s just a quick way to check for any back up of waste that may be behind an intestinal blockage
- FLUIDS – I’ve managed to do pretty well to keep my hydration above danger levels but when you have high, watery output and are vomiting, it’s hard to keep on top of so I’ve been on consistent fluids since arriving
- MRI – they want to image the whole bowel and see what’s happening in there
- FLEXIBLE SIGMOIDOSCOPY – As I still have my rectum and some large bowel remaining they want to check this by doing a camera test up the bum! Due to extensive strictures from previous flares, I have to have sedation and a paediatric scope used but my last one was 8 months ago and was still intensely painful so I can’t say I’m looking forward to it. They want to ascertain if there is still any activity there and if it is active Crohn’s or Diversion Colitis). I think my consultant is definitely looking at getting rid of it now but the speed that needs to be done will be determined by what is going on. I wrote a post about my last flexible sigmoidoscopy experience which you can read here
- ILEOSCOPY – yes, they want to put a camera in my stoma! This is much less painful than it sounds according to my doctor but as I’m having alot of pain behind and immediately around my stoma I can’t say I’m not worried. During this test they pass a small flexible camera (like the one used in a flexible sigmoidoscopy) through the stoma to look into the small intestine. She says the worst bit is all the air they put in. Ste has had it done and said the worst bit is your stoma swelling afterwards and that I need to make sure I keep a check on my bag and cut them accordingly so as not to strangle poor Stanley. I will endeavour to post about the experience and let you know more information when it’s done.
So so far, I’ve started meds and fluids, had the x-ray and signed consent forms for the two camera tests. They have changed me to IV anti sickness and although I’m still getting nauseous I’ve not physically vomited now since that.
Hospital…again? Fear Of Failure
I had a really interesting chat with Ste yesterday that I wanted to share with you. I was absolutely gutted that I had to come back in. I cried in the car on the way home to collect my things, cried on him when I got home, cried when he left me at the hospital. I can’t believe I’m back here again.
Having grown up chronically ill I have never known anything different and although I’ve had admissions throughout my life they have generally been planned and short. Since my Crohn’s took a nose dive 3.5 years ago, hospital stays have become a more regular part of my life. I see it as an end point – I’ve tried and failed to cope and I have to concede defeat and come in here to be fixed, again.
Ste told me I had to look at it in a different way and his words really meant a lot and I thought they might help those of you who look at hospital stays like me – as a personal defeat. He has had numerous, lengthy stays in the hospital including an 18 month stint. He reminded me we are chronically ill. Hospital is part of our lives, we have to factor our health into our every plan. Being out is a blessing, we have to count those days as a victory for us against our chronic illnesses. Rather than feeling admission is a weakness, a failure, we should look at it as us doing the right thing for our body. It needs help and we can’t control that, but we know the point when enough is enough and we ask for help from our doctors and nurses graciously.
Rather than seeing this as an end point to my battle, I am looking on it now as the beginning to my next fight. One to battle through and win, so when I get out I can really start enjoying life again. I also want to thank you readers, for sticking by the blog and vlog, even when the content is a little bit hit and miss due to being poorly. This blog is my passion, I love it and it gives me something to work for everyday. Your following it is very much appreciated.
So I thought I’d post pictures so people can see the effect of the steroid ‘moon face’ that’s particularly rampant when using higher dose steroids like I’m on at the minute.
I have also started on fluids so that won’t be helping as my body is being literally pumped full of them! My mum and dad popped in tonight and they noticed a difference already! Ugh!
Cannula Count – 2
I can be terrible for cannulas and generally have to get a few done while I’m in for a number of days! Because my elbows don’t straighten due to my arthritis I asked for it in my forearm as I find it easier to manage. It went in fine with no problems.
Unfortunately, after taking my fluids off to have my X-Ray it must have decided to have a paddy. When they put it back on my arm was really painful so I called them and said it needed to come out. After being a bit of a bleeder (oops)y new went in the back of my arm this time and is working beautifully so far!
Today I only got tea here but I was pleasantly surprised. I hadn’t ordered it as I wasn’t here obviously and it probably wouldn’t have picked it but it was pretty lovely! I managed about half of it so was pretty proud of myself and although the skin on the chicken looked lovely I didn’t want to risk it! The chicken breast was moist though, the roasties were lovely and the gravy was decent!
So that’s pretty much day one in a nutshell! Feel free to ask any questions below, I will endeavour to answer as soon as I can. I’m not promising content every day but will do it as and when I can and keep you updated.
Good morning and happy new year! Who else is so ready for 2019? I am definitely hoping for lots more positive and happy experiences this year and am ready to get working for them.
I am pleased to say I completed my Instagram photo challenge last month and am rather pleased with my little self! The prompts were great and definitely got me thinking about everything around Christmas. I also was pleased to discover a couple of other great parent bloggers over on Instagram through the challenge. Thanks for hosting The Granthams!
It sounds cliche, but this year I am starting with a fitness challenge. I was definitely wanting to lose some weight prior to Christmas, but thought waiting till after the festivities were over was the best idea!
I have tried not to over indulge too much and have not been a total pig, but after the years of steroids taking their toll, I am heavier than I am happy with and ready to get down to a version of me that I am more content with.
I know many will look at me and say you aren’t overweight, and I understand that, but I am happier when I weigh a little less than I am now and am looking to get back down to 56/57 kilos.
My Weight Journey
For most of my adult life my weight has been pretty consistent at around 50-52 kilos. A Crohn’s flare in December 2013 saw my weight plummet by a stone in just 6 days over Christmas, but at the time I just battled through it as it wasn’t long after my diagnosis and I thought I just had to crack on, as you do! Prior to my ostomy surgery in 2016 I was down to 40kg and severely ill. As I had been poorly for around six months, I didn’t quite realise how poorly I looked during this time. Now I look back at photos and the skeleton shape staring back horrifies me.
Following my hemicolectomy and ostomy surgery, I began putting back on the weight my body had lost and was feeling much healthier. After being used to such a skinny appearance for so long, I struggled with this though too. I remember sharing a photo of me holding my cousins newborn baby and everybody saying that I looked so healthy and so much happier – I felt huge. The constant yo-yoing of weight caused by my Crohn’s Disease had caused me to suffer with BDD.
What Is BDD?
Body Dysmorphic Disorder is a mental health condition which causes you to worry about flaws in your appearance. These flaws are often minor, or not even noticeable to others. Because I had been poorly for so long and had become used to how skinny and underweight I was, the weight gain I experienced post surgery affected me badly at first, making me think I was hugely overweight. In fact, I was around 56/57 kilos which, although heavier than my usual body weight, was actually very healthy and I now look back on that photo and love it!
Find out more about BDD, symptoms and what to do if you think you have it on the NHS Website
Since having a couple of bad flares and rounds of IV steroids, I have developed the ‘moonface’ people often struggle with, as well as an increase in appetite which has caused me to gain a lot more weight. My goal is now to get back down to around 56/57 kilos which was my weight post surgery and where I felt most confident and happy.
To do this I will be ‘dieting’ to an extent. I eat pretty healthy meals anyway but I would like to stick to a healthier schedule of eating and make sure my snacks are healthier. Having a stoma and Crohn’s Disease won’t make this ease, as I struggle with fibre and have to stick to lower residue foods but I am ready for the challenge and also looking into low FODMAP as a potential thing to try.
I have really been falling down on my exercise this last year and this is where I am going to make a concerted effort to improve. I used to walk the children to and from school every day and now don’t have that to do, so I have cut out a huge chunk of my normal daily activity.
I found this on Pinterest and loved the fact it was quite relaxed and you could choose different styles of workouts to fit the theme each day. As I have arthritis many of the workout plans posted are entirely unsuitable, or have certain chucks of them that I have to miss out. I will be swapping the yoga sections fop Pilates as this is very similar and something I already do and enjoy.
I grabbed this from He & She Eat Clean and they do have some workouts for the cardio and strength training days if you would like to have a look!
Would love some exercise buddies, so if you want to join in please pop a comment below – we could maybe start a little chat group where we can keep an eye on how we are all doing and motivate one another. I am really looking forward to this challenge, although we will see if that mentality continues to the end of the month… wish me luck!
World Arthritis Day was yesterday, October 12th. I have created a video on my YouTube channel to help raise awareness of arthritis and the fact it affects children and young people too.
Please check it out and don’t forget to subscribe to my channel to see more videos from me int he future.
Following my post, Handy Hacks For People With Arthritis, I was contacted by the lovely people over at Ecovacs. They make and sell robotic hoovers and wanted to ask if I would like to test one out – of course I said yes!
Another Handy Hack
Ecovacs had seen my post and felt that their hoover would be a really good idea for people who struggled with mobility issues like I do. Hoovering can be a very physical and tiring job. The Deebot is a robotic hoover which not only vacuums, it also mops! Saving me from these housework tasks sounds like a dream come true and we eagerly awaited our robot’s arrival.
Setting The Deebot Up
I was slightly worried about this bit as I am not very technically minded, but luckily I have a Ste! He said it was really simple though, and it was sorted in no time! The Deebot’s ‘home’ docking station needs to be placed somewhere the bot can get itself back to, and needs to be plugged in as this is where he charges. There are a number of options including doing the edges of your room as well as an all over vacuum.
Using The Deebot
You can control the bot using the buttons on the actual bot, the remote control or the app which you can download from the Apple or Android store. We generally set it up when we go to bed to hoover the living room and although we still need to occasionally get the big hoover out, we probably only need to do that once every week or two as opposed to every other day. The bot doesn’t always manage to get over our rug and if it cannot go over it, will think it is a wall and then only do half of the room which is a bit annoying. Even though our living room is set out with our sofa in the middle of the floor, it manages to get all the way around which is impressive. It also leaves the carpet really fluffy. The hoover is really quiet too, even though we have the suction on high. It is compact so fits neatly out of the way when not in use.
When Ste was recently in hospital, I told him I needed to hoover when I got home from visiting him. I returned home to a beautifully clean carpet – he had set the bot going using the app on his phone when I left which was brilliant!
Mopping With The Deebot
Changing the Deebot to the mop setting is easy to do and does not take long. The floor does not get overly wet so it does need doing by hand once a week still, but this is perfect for the in between cleans. Because it does not get too wet, it is easy to set up and do in the day, as if you have to walk over it, you do not need to worry about slipping over.
Would I Recommend?
The Deebot is a big investment money wise, but without a doubt I think it is a fantastic aid. It is perfect for people with arthritis and other chronic illnesses who have affected mobility or struggle with lots of household chores. It would also be great for parents and people who work – the bot can be set to hoover while you are out so you can return to a lovely clean carpet every day.
Where To Buy The Deebot
Check out the website
I am really grateful to Ecovacs for getting in touch and sending me this amazing device – it has helped me so much to keep the house clean and tidy, saved me time and helped save my poor joints. I am also delighted to announce that Ecovacs have agreed to host a competition with me for one of my lovely readers to win their own Deebot! Keep your eyes peeled across my social media (@thespooniemummy) in the next couple of weeks for the announcement!
I hope you have enjoyed this review and agree wioth me about it being a great aid for people with disabilities. I really am amazed at the opportunities I have come across through blogging, and love getting to share things that I really think will benefit my readers. Have a great weekend everyone,