My Life: The last few months

Guess who's back?

Oh what an awful couple of months I've had, my health took a nosedive and I'm being monitored with borderline diabetes, I've been too tired to do anything so my weight has ballooned to nearly 16 stone! (I feel sick with myself writing that). However on the plus side I had my ESA appeal last month and it was thrown out within 15 minutes, the doctor and judge just couldn't believe that I had been deemed fit for work by Atos and couldn't apologise enough for what I had been through - even though it wasn't the judge or doctor's fault.

I definitely think the last 7 months of stress and worry over the whole benefits process is what caused me to be poorly. Just to recap, I received my form back in April last year and duly filled it in listing all my ailments, aches and pains. I was called for a medical in July and deemed fit for work and forced to sign on in September. Despite my doctor issuing sick notes I was put in the position of having to choose whether or not to submit them, you see you are only allowed one extended period of sickness whilst claiming JSA which is 13 weeks, after that you either sign on and seek work or you don't sign on and try to live off, well, nothing, foodbanks or hand me outs. Child benefits are not enough to live off and they are for Squiggle, not me, so I had to seek "proper" work every week, apply for jobs which I knew full well I wouldn't be able to do and go to work focused interviews which just seemed to make me feel even more useless than I already do. I say proper in quotation marks as I've tried my hand at being self employed in the past but that's even harder when you don't know from one day to the next how you'll feel. I felt guilty taking on jobs and then having to cancel at the last minute as I was too poorly to do them.

I have had enough with the stigma of being labelled lazy, work shy, bone idle, as well as people commenting on how lucky or good it must be for me not to work. Well maybe they are the lucky ones, lucky enough to be able to get up every day without fail, lucky enough to leave the house and go to work without feelings of anxiety and fear of embarrassing themselves in public, lucky enough to earn a wage that will allow them to live a more comfortable life than me, lucky enough to eat without being sick or suffering from exploding diarrhoea, lucky enough to not have to shovel pills down their necks like sweeties. Yes I get to stay at home, but I'm usually bedridden with chronic pain, or spending time hovering over the toilet not knowing which end will evacuate first. I make the most of the days that I do feel well, but then end up regretting it for days after as my body catches up with itself. I worry that I'm a crap friend as I don't make plans to go out or if I do I cancel them at the last minute, I am really grateful that my friends still think to include me in their invites even if I never go. I worry that I'm a crap mum, because I have upset Squiggle sometimes by cancelling planned days out, it breaks my heart when I hear him say "but mum, you promised we would go here" or "mum, you're no fun, you never take me anywhere" and I worry that this will only get worse the older he gets.

But, now that the appeal is over and done with, I guess that I have one less thing to worry about, so now it's time to concentrate on the parts of my health that I can do something about, my weight.

I am going to take the plunge and sign up to Slimming World tomorrow, so be prepared for lots of Instagram pictures of meals, a lot more meal planning and hopefully some positive posts about my weight loss.

 I'm a great believer that a good mind set will make me feel better in myself even if I'm not actually better in myself!

Thanks to all my readers who are still here following me, I know my posts are few and far between but it means a lot to me that you are still interested in what I have to say.
xxx

Hi Honey I'm Homer!

Well after spending New Year in hospital I am pleased to report that I am now out and back home. I've been basically told that there's nothing more they can do in hospital for me this time, as it appears what little pancreas I have is doing fine and dandy and working like it should be. My blood results are fine, so there is no need for me to stay in, in fact they're not sure what's causing the pain - they just think it's the I.B.S playing up.

The doctor has done a full review of my medication and has started me on some new pain killers which need to be reviewed in clinic in 2 weeks time, if I get that far, I've only just started them on the lowest dose and by heck am I spaced out. I took my breakfast dose and then woke up 4 hours later. Not sure how I am meant to function as a parent  whilst I get used to these bad boys, thankfully I have a great family who are running around looking after Squiggle, and he's at his dads this weekend, so I can concentrate on .... well concentrating!

I must say that I am now getting a bit fed up with my body and with everything that goes wrong with it. IBS just seems to be a flippant thing, everyone suffers from it now and then, but not everyone suffers to the same extent. Imagine, every day waking up in pain, attempting to eat breakfast, having feelings of intense bloating, more pain, then the sudden feeling of your guts dropping, attempting to get to the toilet but never making it in time, having to clean yourself up, then having more pain, constantly burping and farting. Then it's dinner time, and it's the same rig-moral and then the same for tea time! I spend more time in the bathroom than any other room in the house I'm seriously thinking of installing a TV in there!
I've tried various diets, high fibre, low fibre, low carbs, low sugar, high protein, non of which have had any impact on my digestive system, I've even been prescribed digestive enzymes (they make them from the pancreas of pigs!), which just make me sick (not because of the pig thing, just because they are nasty to take!). There is no relief. If I need to go somewhere, then I have to try and go without food, which means afternoon appointments cannot come soon enough. I'm usually shaking with hunger by then.
And now I'm fighting a case with the DWP, who after 7 years of being on ESA have decided that I am fully fit and capable of working. Never mind the inoperable hernias I suffer with, the ongoing arthritic pain, chronic abdomen pain, dizzy spells, nausea, constant fatigue (I sound like a right catch don't I?). The job centre told me to get a little job cleaning, ha, are they having a laugh? I don't clean my own home, why would I clean somewhere else? My mum and friend come round to help me out. Plus the doctor says I'm not to do any lifting, bending, pushing, pulling, stretching, so I can't even vacuum, which is my favourite part of cleaning!
Anyway, enough of me moaning, I'm back home, and I'm glad to be home. I hope the tablets settle in my system quickly, so I can at least try to live a pain free life, and let's see what other investigations this year brings at the gastroenterology department!

Happy New Year from my hospital bed

Well I certainly didn't think I would be writing a blog post at this time of night on New Years Eve/Day, I should be out partying with friends or snuggled up with my loved ones at home, but sadly I am in neither of those places. Instead I am on my own, in a single bed ward in hospital overlooking a brick wall, with suspected pancreatitis or intestinal obstruction.
I am currently in so much pain it's unbelievable,  and perplexed that me, a chronic IBS diahorrea sufferer has suddenly become seriously constipated overnight!!!!
I have doctors arguing amongst themselves as to whether or not I should be nil by mouth, if it's pancreatitis again, then I should be nil by mouth, so as to give my body a rest, but if it's a blocked bowel then I should be eating and drinking normally in order to get my system moving. All I know is that it hurts to eat and take even a sip of water.
Yet I've been dosed up with laxitives at both ends this evening, and as I hear the new year fireworks start outside I can feel an explosion of my own coming on.
There's tears falling down my face as I spend this new year completely alone, isolated and shut off from the world.

Hopefully things will look brighter in the morning!

Low fibre diets are not for me

Hello, hello, hello, I'm still here and still on the low fibre diet, but my word have I suffered these last few weeks. I have had absolutely no get up and go, I've found myself wanting to sleep all the time and since starting out on it 8 weeks ago, I've gained a whopping 20lbs in weight!

I'll be seeing the dietitian again this week and will be demanding a weight loss plan. I'm currently stuck between a rock and a hard place, yes the low fibre diet has eased ( not cleared ) my I.B.S symptoms but has done so at the detriment to my weight and general well being. Personally I think I'd rather have the problems before the diet rather than what I'm contending with now.

I've done some research into low fibre diets and the main negative issue is weight gain, which with further research is caused by overeating due to not feeling full because of the lack of fibre. This is certainly true of me, I've never felt as constantly hungry and ready to eat my own body weight in food as I have done lately.

I know winter plays a part in the struggles of diet and weight loss as it is human nature to keep warm when cold and what better way than by keeping and storing body fat. So in winter we do tend to eat and indulge in comforting stodgy foods.

So what now? Well I am going for a review with the dietitian this week so hopefully we can sort out the eating side, and I'm hoping that we will get an early spring ( or at least a warmer end to winter ) so I can get out running again. If not I am seriously considering reliving my Mad March Marathon and getting the old exercise bike out and peddling 26 miles a day. I have a few hours to sleep on the matter before March starts tomorrow!

Watch this space.

IBS ( Irritable Bowel Syndrome )

I've suffered with a dicky tummy for most of my life. Ever since I can remember I've always had to know where the toilets are in case of emergencies. I've had bloating, constipation and diarrhoea - sometimes both in the same day and stomach cramps that make period pain seem like a blessing.

I spotted this in a car park!

Like most people I've put up with it and not really bothered seeing my GP, mainly because prior to everything that's happened to me I was embarrassed about it, but after my stay in hospital nearly 5 years ago, things suddenly took a turn for the worse and got a lot more embarrassing for me. The cramps got much worse, the bloating got worse, the noises my stomach makes got worse and if I didn't run to the toilet fast enough...... well I won't disgust you with the rest.
Initially it was put down to the overuse of antibiotics. I was pumped full of them in hospital but as I came off the antibiotics, things didn't get any better.

I've been battling with the doctors ever since and knew in myself that it was Irritable Bowel Syndrome ( after all I have the internet and any Tom, Dick or Homer can self diagnose themselves now - right*? ) but the doctors had to rule out Irritable Bowel Disorder first.

What's the difference between Irritable Bowel Syndrome (IBS) and Irritable Bowel Disorder (IBD)?, Aren't they the same thing? 

No, IBS isn't as serious as IBD medically speaking, although it is just as embarrassing to have.
IBD causes inflammation to the bowel, along with ulcers, bleeding and other damage. IBS is classed as a functional disorder which means that the bowel looks normal but doesn't work like it should.

So cue many a colonoscopy, endoscopy, MRI and blood tests. They have all come back negative for Chron's and Ulcerative Colitis, and so an official diagnosis of spastic colon was made or more politely put IBS.

What causes IBS?

In my case, the doctor has put it down to being very ill for such a long time. He explained that the bowel and brain are linked, and if one becomes stressed then the other becomes stressed too. So it actually becomes a never ending cycle. I have noticed that when I am run down, tired or suffering from normal everyday stress then my symptoms are worse.
I also have to watch what I eat, fibre is a big no no in my case. It can, will and does make things a lot more painful for me. I also have the doctor's approval to not eat much fibre, he hasn't said go out and splurge on burger and chips but I must stay away from brown bread, wholemeal pasta and only eat fruit and vegetables in moderation!

I've also to try out some tablets which should help relax the muscle spasms in my gut which should stop me running to the toilet and I'm hoping will ease the cramping. They can take up to 6 weeks to start working, so I'll report back later and let you know how I'm feeling.

* It is not recommended to self diagnose yourself, if you don't feel well please seek medical advice.

SUFFERERS BUILD NATIONAL CAMPAIGN THROUGH SOCIAL MEDIA TO RAISE AWARENESS OF CROHNS AND COLITIS

Unless you've been living in a cave for the past month, you will have seen the widespread cancer campaign, the #NoMakeupSelfie which has been covered online, in the press and on your TV. Women have been sharing their natural skin selfies on social media in a bid to raise awareness for Cancer. The amazing #NoMakeUpSelfie campaign raised thousands in funds and awareness for Cancer sufferers and their families.
Following in their footsteps, a small team decided to do the same for Inflammatory Bowel Disease (IBD), namely Crohns and Ulcerative Colitis - both of these diseases are debilitating, sometimes life-threatening and often come with humiliating symptoms yet very few people have heard of them. IBD is an auto-immune disease where sometimes surgery is the only option, sections of the intestines are removed, often resulting in sufferers needing permanent ileostomies, internal pouch construction and sometimes becoming reliant on tube feeding. Sometimes doctors find medications to manage the disease and the symptoms become controllable but some of these medications have serious side effects that can be as debilitating as the disease itself. Unfortunately these diseases are often confused with IBS which is a much milder and overall manageable condition. To date, there is no known cure for IBD. Crohns and Colitis UK is the UK association for IBD; providing information, support and guidance to sufferers and their families. They also work hard to raise funds which they hope will eventually lead to a cure for IBD. The problem is, how do you raise funds for, and awareness of, a disease that so few people are willing to talk about, because of the private and somewhat embarrassing nature of its symptoms. On March 23rd, Derbyshire based Marketing Manager, Sahara Fleetwood-Beresford had an idea off the back of the #NoMakesup social media campaigns for something that was much more personal to her and altogether more suitable for raising awareness of severe health conditions. Along with some of the other members of the team working on this campaign, Sahara was diagnosed with Ulcerative Colitis in 2007 and has since had numerous operations leaving her with an internal pouch, constructed from her own small intestine and now battles a new form of IBD, pouchitis. Early in the campaign, Sahara decided it would have to be a campaign that got as many people as possible involved and it had to be something that didn't involve financial outlay. She decided on something simple yet effective. Everyone from the IBD community was encouraged to upload a photograph of their belly alongside the hashtag #GetYourBellyOut to social media sites such as Facebook, Twitter and instagram. They were asked to text IBDA99 £3 (or their donation amount) to 70070 if they wished to donate to Crohns and Colitis UK. The goal was to raise awareness and funds to support research into finally finding a cure for IBD. People without IBD were also asked to join the campaign. The only criterion needed to support the campaign is a willingness to raise awareness of IBD.

A dedicated team of people joined Sahara and have all worked very hard to co-ordinate the project. Gem Willingham and Lorna Haymes both have Crohn's disease and Victoria Marie and Kay Wilkinson have Ulcerative Colitis. Despite the daily struggles they are all dealing with, they have fought on with the #GetYourBellyOut campaign and have helped so many IBD patients come together with a common cause in mind: A cure for IBD and to tell people about what it's like to have Inflammatory Bowel Disease. The campaign has been backed by the charity Crohns and Colitis UK, who have published the campaigns details on their website. Sahara says of the #GetYourBellyOut campaign, which has now gone global “What started out as a campaign to raise awareness of an invisible illness that so many people suffer with in silence, has turned in to a campaign of Inspiration and unity!" The campaign has been met by great praise from the online IBD community and has had the backing of two celebs; Kay Murray and Ali Jawad, who also suffers from Crohn’s disease. The campaign has already raised in excess of £2,500 and the total is rising daily. It is an exciting, innovative campaign that is sweeping social media and the #GetYourBellyOut team are looking for your support. ### Sahara Fleetwood-Beresford is a Marketing Manager for a local Marketing firm, her day-to-day lifestyle is a huge struggle and despite suffering, she has been in full-time employment for over four years, with very little time off as a result of her illness. Sahara was first diagnosed with Colitis in 2007

With thanks to Kay Wilkinson at Brink of Bedlam for the information.