The Devil Within

Every time I hear someone who is a smaller dress size than me moaning they are fat I want to scream at them, loudly! I, on the other hand, am overweight. I am overweight due to the steroids I have had to take for Crohns Disease and because the pain I am in prevents me from being all that active anymore. From the age of 8 until my early twenties it was a very different story indeed. Why? Because I was a bulimic, I am now classed as a recovering bulimic.

I have previously touched on the fact I am bulimic in earlier articles. I am going to share some things with you in this article that some may find distressing or upsetting to read.

From a young age I was taunted at school for being chubby, problem was it wasn’t just at school it was also in the home. As a result I saw myself as being incredibly fat when in fact I weighed just 5st and the only fat that was truly there was puppy fat judging by childhood photographs.

One night close to Christmas 1988 my parents went to a social function. A neighbour, young Forces wife pregnant with her first child, babysat. My sister was nearly 3 so she was in bed very early and I was allowed, as a special treat, to stay up. We sat and watched a program that explored eating disorders, I can’t recall the name of program or indeed what channel it was on but it sparked up what I call my Food Devil.

As I lay in bed that night I thought about what had been said in the program. I was 8 years old and intelligent, I knew exactly what was right and what was wrong. I made a decision that night. A decision thy would mar my life.

I had a choice – carry on eating as ‘normal’ or eat a meal per day but starve myself too or eat then throw up. I chose throwing up.

I would eat regular meals plus scoff chocolate. I would wait exactly 10 minutes then make myself sick. I shall spare you the exact details as to how I would do this!

This cycle would continue for a number of months. One day I collapsed after running the 100 metre race at Sports Day. A teacher noticed my waist was very small. She took me to the school nurse and got me weighed, I had lost almost 2 stone. A few days later I was referred to a children’s mental health team. They officially diagnosed me with bulimia.

By the same time the following year I was back up to my normal weight. My mum continued to mention weight issues but the therapist had given me the tools to block her out.

My periods were dreadful from the start. I don’t know whether this was due to the eating disorder as such diseases play havoc with young womens periods. I have both endometrosis and Polycystic Ovarian Syndrome, or PCOS as it is more commonly known.

In my teenage years I was still chubby from puppy fat regained after my bulimia was diagnosed. I started secondary school, the jibes started once more. It was horrendous. Add in the death of my best friend after a brain tumour at 13 and the Food Devil began to creep back in.

My second bout of bulimia kicked in. Dying to tell someone I wrote a diary, a diary I carried everywhere I went. I could not risk my family seeing such a diary! At a sleepover my friend found my diary. The next day, the 3rd day of Summer holidays, I was taken to a mental health clinic as an inpatient. I remained there for 3 weeks. Others were told I had gone to visit a school friend who now lived elsewhere, family and friends inclusive!

In my late teens it returned. It was milder but but still there. I would eat as much as was possible then drink a lot of different alcoholic drinks so I could make myself sick or eat lots then throw up using glasses of salt water. A good friend noticed that weight was falling off and, with several others, organised a sort of intervention. By the following day I was begging my GP to section me for 28 days.

Within 2 years I had been diagnosed with Crohns. This stopped the physical need to lose weight, am not sure how. I was subsequently put on steroids which have caused me to pile on several stone.

Like all eating disorder ‘survivors’ I get the odd niggle and need to binge. I have, somehow, learnt to handle these niggles.

If someone reading this has an eating disorder then please make sure you reach out for the help you need. You can get through it. You will get through it.

Long Time No Speak

Once again it has been a while since I blogged dear reader. A lot has been happening, some of which has been health related.

Some who follow me on my personal Twitter account will be in the know already. I have not really felt well enough to blog, this is ironic given this is a health related blog.

In March I was invited, by a lovely lady on Twitter called Tilly, to give a speech on the effects of cuts to disability benefits. The event was to take place at Goldsmiths University in London. There were two other speakers, Ross and Leon. We all have varying degrees of illness an disability. The one thing in common we all have is our requirement and entitlement to disability benefits. Unfortunately Leon was unable to make it due to a hospital appointment on the day. Ross and I were both incredibly nervous but Tilly was insistent we would be ok, and you know what we were. Ross spoke eloquently and made some excellent points. If you go to The Pinko Papers and look at the page regarding our speeches to see for yourselves! It was a long but amazing day. One thing is for sure I made two amazing friends that day, Ross and Tilly. It’s actually Tilly’s birthday today, so Happy Birthday!

I have had a few health issues in the past couple of months. Some I won’t bore you with as they are boring me!

One issue was what I thought was another skin abscess at the top of inner thigh on right leg. As I can’t tolerate oral antibiotics it was merely a case of waiting. The abscess was a deep one in my opinion. By the time it was Easter weekend I had had enough of the pain I was experiencing. Bear in mind I am on buprenorphine, which is actually stronger than morphine. On Saturday I went up to the out of hours GP so I could be referred to the surgical doctors. I was immediately admitted and was to remain NBM (nil by mouth) as I could be going down to theatre very soon. I had a cannula inserted in the back of my hand and was admitted to the same ward, and bay, I was in last May and June! Hours passed me by, I had Draw Something; Twitter and my book (Angels & Demons – thank you Aimee) to keep me amused. They had given me buprenorphine IV so felt very spaced out so concentration levels were low. Eventually one of the nurses came to tell me that due to more serious procedures I wouldn’t be going to have operation until tomorrow (Easter Sunday) and I could eat/drink until midnight. The plan was I would eat a meal at 1130pm, which I did. I then had all my usual pills and fell to sleep. At around 3am a registrar came to see me and had a look at the affected area. The concern was it wasn’t red enough, he said I was to remain NBM and I would be seen by Consultant in the morning before deciding what to do next. Well he did come to see me, at about 1030/1045am. He didn’t think it was an abscess but he felt he needed evidence just in case he was wrong, an MRI and ultrasound was ordered. The scans proved him right, the air punching as I walked back was testament to this. It turned out it was actually a torn inner thigh muscle! Equally, if not more, painful. Eventually, after a few hiccups and stressed tweets later, I was to be discharged with orders to rest up.

Now, onto my ear operation! Ok so that was done this Friday just gone and it is awesome to hear once more. What I will say is what a hassle it has been to even get to this point. At the pre-op (standard procedure prior to ‘elective’ procedures) they found out I didn’t have anyone to drive me home so demanded (rather rudely I hasten to add) I find someone or no op. I asked everyone I could as well as contacting charities who did things like that but to no avail. Eventually I approached my GP surgery who, on the Monday before op, arranged for me to be done as an inpatient as the hospital is a considerable distance from my home town. I got to the hospital, having left mine at 530am, for 730am. I was first on the ENT list. Prior to getting ready I discovered that I would be discharged same day – considering the stress I had gone through to get to this point I was very upset. A kind friend said they would look after me from 6pm so the ward arranged for me to have hospital transport home. I was walked down to theatre about 845am and was ‘knocked out’ by 9am. Grommets were inserted into my eardrums successfully following microsuction cleaning. I was back on the ward by 1010am with a sore throat after intubation (tube down throat to help me breathe during a general anaesthetic) and painful ears. Transport was due to collect me earlier than planned due to change in friend’s circumstances. Needless to say a 3 hour waiting game was played out! The nurse that looked after me was lovely and one of the ward sisters but there was another staff nurse who spoke to people so rudely I was pleased to leave. Yesterday was somewhat of a write off as I was drowsy and dopey (yes I can get even dopier). Today I have managed to do a bit but I am starting to get tired now.

I have appointments various looming for my various parts of the body but rest assured I shall keep fighting. I am struggling to maintain my usual levels of energy, think this is a lot to do with trying to keep to a routine.

I actually lost a couple of tweet ‘pals’ the weekend I was in hospital. One of them I had met in real life so I was somewhat disappointed but I know not everyone is happy with me tweeting about health. I refuse, however, to change my ways. Nobody has to read my tweets and nobody can tell me to what to tweet, especially when they do not know what I may be going through!

Blogging should be easier for me to do from now on and I hope to blog again soon. I do have a few ideas stored in my head so watch this space!

Much love xxxxxxxxxx

A Response to a Daily Mail Article by Dominic Sandbrook

A couple of days ago the Daily Mail published an article about why Britain has fallen out of love with the Welfare System. It is written by Dominic Sandbrook. The link to aforementioned article will be provided at the end of this so you can see what I am referring to, I am sure many of you will have read it or have heard about it through Twitter.

According to said article 7.2% of Britain’s GDP is spent on Welfare. You see Whitehall, where our lovely (read this sarcastically please) government is, it is where the poor get poorer and the rich get richer. The Welfare System is there to help those in genuine need out in times of hardship or inability to work. Inevitably, there will be those who abuse the system in the same way some MP’s abused the expenses for things such as toilet roll holders; duck houses for the pond and even rent or mortgage payments for a place they did not need. Whatever the system there will always be those who break the rules.

In the Daily Mail article the Heaton family, allegedly in receipt of £30k per annum benefits, are quoted as wanting a bigger house for their large family. It is this that makes me, as a benefit claimant, feel angry. I personally feel that 3 children should be the maximum when it comes to Child Benefit, anything more than that then the parents should work to fund extra children unless their situation changes.You also have to factor in that the Heaton’s benefits is inclusive of Housing Benefit.

The article also makes reference to a recent YouGov poll. Apparently 74% of us Brits that were polled feel benefits should be slashed plus 69% of us feel that the ‘Welfare System has created a culture of dependency’. Again, I strongly believe the only people who were polled were working individuals who have never had to claim benefits. It is those who have never claimed that feel they have more rights than those who have because they have paid into the system all their working lives. Put it this way, you are only ever 2 pay packets away from being unemployed and/or being homeless. Those who have never claimed do not realise what slashing benefits could do. It is not just couch potatoes on benefits, it is former government officials and bankers from some bank making people redundant. Slashing my benefits, am disabled and sick, would result in catastrophic events. I would not be able to attend vital medical appointments. I also have to get out of my flat at least once to twice a month for something other than for medical appointments, even if it is a couple of hours in town or something.I cannot afford to much more than that.

Jobseekers Allowance, at present, is £67.50 per week. Out of this you are meant to pay bills; use the internet to search for work (or benefit gets suspended); attend job interviews – oh and food of course. So sit down and work this out, what would this mean for you? Yeah it’s pittance isn’t it? If benefits like JSA were slashed then it would mean the claimant has little chance of being able to look for work or go for interviews. That would mean they would not get off benefits any time soon. If anything slash MP’s wages or stop funding foreign aid so much, allow people to make their own mind up about donating abroad for crying out loud. This country is run by people who have never experienced hardship, maybe they should try and run their homes on £67.50 a week for a month.

The article makes reference to Clement Attlee who was Prime Minister from 1945-51, when he left office the country’s welfare bill was a mere £700million. Now to compare then to the present day is daft, anyone in their right mind will know that the welfare Bill will have been elevated due to rising living costs in the PAST SIXTY YEARS for crying out loud.

Sandbrook wrote: “Not surprisingly, waste and fraud are widespread.” I do not agree at all with this statement. If you look at the figures only 2.1% of benefit claims are fraudulent. You only have to Google benefit fraud breakdown to see DWP related publications on this matter and to see the exact breakdown on figures per benefit, including Pension Credits.

He also writes, “the people who really lose from this, incidentally, are those who are genuinely disabled………..deserve boundless public sympathy, instead, thanks to abuse of the system they are often treated with scepticism”. The scepticism he refers to is due to media printing stories of benefit fraud every 5 seconds. It is silly, it means everyone who does not claim benefits will tar every claimer with the same brush. I am unfit to work due to the fact I am taking 400mg of buprenorphine every 8 hours due to my pain levels, no employer would every take someone on when they are on incredibly strong opiates. I wish I could work, I wish I could have more than I do in my bank account. I wish I could complain about going to work everyday and moan about being tired due to work. I shall have to wait a while.

I would love it if the media world would start publishing positive stories about benefits for once, portray the fact that the majority of people on benefits are indeed genuine whether they are on Jobseekers or Employment & Support Allowance.

If Dominic Sandbrook does see this article then I would welcome his, or any other journalists, opinion on what has been said.

Bye for now xxxxx

Workfare More Like Unfare

This article is slightly political, it is regarding the Workfare scheme that has been in the Press a lot recently. Please bear in mind at this point that I currently claim disability benefits and would love to be able to work. I would welcome any comments from either side of the fence in relation to this matter!

Jobseeker’s Allowance is a benefit you may be eligible to claim whilst unemployed and able to look for work. It is one of many benefits available in this country that will ‘cover living expenses’. You are to search for work on a daily basis using various mediums such as job sites and local newspapers plus also you are required to ‘sign on’ every 2 weeks on an allocated (based on your National Insurance number) day and time. The current rate of JSA, as at February 2012, is £67.50 per week. The benefit will rise annually in April just after the start of the new tax year. The money is paid fortnightly into a bank or building society account.

The government has been behind a recent drive to get the nearly 3 million people unemployed in the UK back into work. With a somewhat broken economy meaning jobs are being lost daily, the chances of finding work decrease daily. Major high street brands have vanished from our towns and cities with thousands of job losses, government (including Forces personnel) employees find themselves having to look for work now too after crippling budget cuts. Some will have no problem in finding work as certain sectors have been left relatively unscathed by the recent economical meltdowns. Some will find themselves having to take positions that will affect their financial situation dramatically, and not in a good way either. Some will find themselves looking for work over a period of years purely because their sector is so unstable no firm are actually taking on permanent staff any more.

Part of what is on offer to a Jobseeker is a scheme called Workfare. This is where an unemployed person gets ‘work experience’ whilst still receiving their Jobseeker’s Allowance. The claimant is expected to work up to 30 hours for about 2 months for an employer in any number of sectors. I am also aware that the claimant is expected to still attend the fortnightly signing on appointments as well as look for work in the usual fashion. They will be expected to work alongside people who are being paid actual wages as well and these paid employees may have less experience than the person on ‘work experience’.

Some, who perceive all benefit claimants as scroungers, would have you believe that this scheme is excellent as it means people have to work for their benefits. Nobody I know is a scrounger, scrounger is a derogatory word that the media like to tar every person on benefits with. Only a SMALL minority of recipients are, in fact, fraudsters.

Anyway, I digress. The Workfare scheme means a person on JSA would work for say 30 hours for just £67.50 a week, this equates to £2.25 an hour. Now unless you are an Apprentice (different rules apply) you are meant to work for no less than the minimum wage. Whilst on this placement you may be expected to pay for your own travel to ‘work’ as well as your regular bills; food etc. You will also be expected to be suitably, and appropriately, dressed for the work environment so if you do not have access to such clothing for whatever reason then the likelihood is you will be expected to ensure you have these items of clothing out of your JSA. As far as I am aware the Department of Work and Pensions does not provide clothing assistance in relation to this matter.

It should be pointed out that whoever you are assigned to for ‘work experience’ that there will be no guarantee of gainful employment at the end of it. Companies will just see it as a bonus for them having had free staff for a few weeks in my opinion. Also, you cannot refuse to take part in this scheme as it is mandatory. Mandatory means that you have to do it because it is a rule and/or a law. You will be sanctioned if you do refuse and lose any financial support that was previously given thus meaning you will not be able to cover living expenses. The sanction could be anything from a few weeks to six months dependent on circumstances and previous history.

I shall now give you an example of a Jobseeker’s claimant. A dear friend of mine has worked in the retail sector for a number of years. She has recently found herself made redundant. She is in her 40s. She feels, like many others, that the government focuses on the youngsters (16-25 year olds) too much. There is a lot of help for people under 25 and for people over say 60 but nothing to support those in the middle of this age range. My friend is more than capable of working hard and is willing to work hard but there are hardly any retail vacancies at the moment where she lives. The fact she feels demoralised every time she ‘signs on’ is upsetting her, the longer she is unemployed the worse her lack of self-esteem will be. Yet there is not a lot of support for people in their 40s. If she was to take part in the Workfare scheme (it is applicable to anyone of working age on Jobseeker’s) she would be working alongside people with 20 years less experience telling her how to do a job she knows well. She would happily work 10 hours as part of this scheme as it equates to what she would earn if on National Minimum Wage. She feels that the companies concerned should actually pay the going rate, ie National Minimum Wage. I hope for my friend that work is found soon so she can bypass this ridiculous government idea.

Now, I am one of those claimants who fall into the category of ‘cannot work but would love to work’ and am facing my own benefit battles in the not so distant future. If I was faced with this Workfare scheme I would want to be paid a minimum of £6.08 an hour, or whatever the rate would be, for the hours spent working. With some companies pulling out of this scheme, and they are major companies, one would argue that perhaps the government needs to reassess the situation in relation to this matter. A lot of things have been said in the media, you only have to Google ‘workfare DWP’ to see what I am talking about. The government really needs to start listening to the general public and not the media, the media have caused enough problems by creating a stereotypical benefit claimant. This stereotype looks like Vicky Pollard from Little Britain with 10 kids and a council house. Stereotypes and the media cause issues for those in need as well as causing the government to believe media hype.

No person, irrespective of circumstance, should have to work for their pittance of a benefit. My suggestion is that the government encourages this Workfare scheme but they ensure the claimant is paid a proper hourly wage whilst having their benefit temporarily stopped for the duration of their work experience. This will mean the claimant feels like a human as opposed to a slave and they gain the confidence needed. If they are lucky to gain employment as a result of this placement then their temporary stoppage of benefits becomes permanent. People should not have to work to claim their benefits if they are in need of assistance, just offer them a job or pay them as a temporary member of staff.

Just A Quickie

Ok, so am going to apologise for the delay in relaying this information to you all dear readers. I have been having a Hidradenitis Suppurativa flare up which has involved some not very nice abscesses in some not nice places.

I was expecting to have incision and drainage but due to the fact I was too ill for surgery the gynae team decided to lance them. I was brave, apparently, by having them lanced with just gas and air. All I know is the language that was coming out of my mouth was rather horrid, but necessary when one is in some pain.

As a result of this flare up I have lost sleep so my GP, today, has put me on a short course of Zopliclone. He has also decided to up my gabapentin to 900mg a day.

Please bear with me if you are requesting a follow for windsock_2, I do not have complete access to the internet at the moment. Normal service shall resume in a few days, more likely this weekend coming. 

For now, please take care and keep well.

Marmite xxxxxxx

Dear 14 Year Old Self

Earlier this week there was a Twitter hashtag, #dear14yearoldself, and I could have tweeted many a reply to this hashtag. Like the previous article I decided the best option was to blog. It has take me a few days to write this, not for the fact it is long merely because some of it is actually a little emotional. So here goes, a letter to my 14 year old self from the future (or present whichever way you see it) as a 30 year old woman.

Dear Me Aged 14,

I am writing this to you when you are 30 so I can prepare you for the next 16 years ahead. Yes, I know 30 seems ancient but you do get there eventually! Right now you are a stroppy hormonal bitch to everyone, this will change but only just. What I am going to say to you may upset you so have Daisydoll and a tissue ready sweetheart.

Very soon you will be changing schools because of something that happens with a few girls at school. Do not worry this change is positive as it will soon transpire Daddy is posted away halfway through your GCSE years. It is the same school as your little sister.

Shortly before the change in schools you and Mummy are involved in a car accident. It leaves Mummy with serious injuries, a neck fracture to be precise. She will be fine but will need lots of time off of work. You sustain whiplash injuries, you were saved from serious injuries by the fact you were eating a KFC Tower burger. Mummy having time off does affect her mental health but bear with her and try not to take everything she says to heart. Daddy is amazing through all of this, as is his boss.

Because of all the bullying you have had up until now your self-esteem and confidence is at an all time low. Please do not allow the bullies to force you out of the education system you are in. Through your whole school life teachers have doubted you would achieve anything more than failure. You are intelligent and very capable of pursuing your dream careers, you know forensics or nursing. You would be excellent at both. Believe in yourself and do not let others make your self belief be dumbed down. Achieve what YOU want, not what others feel you should achieve. You will regret it bitterly.

Health wise, as ever, things are far from perfect. At the moment you are experiencing the start of Crohns Disease. Get Daddy to pester GP and get him to send you for tests, do not believe the IBS diagnosis as it is incorrect. If you get tests done now you will not need a life saving operation that will result in a bowel resection. There will be many other complications along the way but please do not feel like you have to give up or stop fighting. Never give up hope. There is some good news, however, and that is you will stop needing the hearing aids in 4 years time. You will have your ENT surgeon to thank for this.

No matter what happens do not make friends with a group of people you meet in a nightclub, they are the wrong sort. They will ruin your life and turn your life upside down. I do not wish to divulge what happens but you will regret it massively. Stick with the friends you will have at 18 as they would be the best friends you had.

Be true to yourself, you will know what I mean in about ten years time. You are a good, likeable, loveable and caring person. Let people see that side of you, do not hide who you really are. If you do hide the real you it will only lead to massive heartache and never being able to resolve the aforementioned heartache.

Your baby sister will excel at school. She will soon become a very talented musician as well as exceptional straight A student. She will train as a doctor of medicine. As ever you will be incredibly proud.

Life will change family wise. Mummy and Daddy will sadly divorce, eventually you will see it was the best thing to happen as they are both nicer(ish) people. It will devastate you emotionally and mentally, make sure you get counselling before you have a breakdown. Sad isn’t it? Our worst nightmare was a broken home. A home where 2 sets of birthday presents arrive and so on. It is not all bad, they will find happiness with other people. You will not take sides for reasons that will become obvious to you. Allow yourself to cry when you need to, express how you feel.

You will have a few failed relationships but there is hope. Never forget what Nana told you before she lost her marbles, you are a beautiful girl and you deserve someone beautiful inside and out to be your guide through life.

With lots of love, xxxxxxxxxxxxxxxxx

PS The hamster you thought is Goldie is in fact a replacement after your Daddy kind of let him out the house! Ooops sorry sweety xxxxxxx

So, that is my letter to me. How many of you are shocked? I know I was.

For now,

xxxxxxxxxxxxxx

A Twitter Crohnie Club Reply

Last night one of the people who tweets from the Twitter Crohnie Club account, @TwitCrohnieClub, asked three questions relating to having Crohn’s Disease. I thought, rather than tweeting the answers, I would blog my replies!  So here goes……

 

HOW DIFFERENT A PERSON WOULD YOU BE IF YOU DIDN’T HAVE CROHN’S?

I would be a very different person if I did not have Crohn’s. I would still be working within a government department wondering whether I was one of the one’s being made redundant in the latest line of cuts. I would still be going out getting drunk as often as possible not worrying what people thought of me getting so drunk all the time. I would still be getting used as a doormat by certain people from my past. I would not have to plan my day around medication, hospital appointments and toilets. I doubt I would be as strong a person as I am now. I have changed massively because of Crohn’s, some parts of my life have been completely changed and others changed a small bit.

 

DID BEING DIAGNOSED WITH CROHN’S CHANGE YOU AS A PERSON? PERSONALITY WISE?

Dramatically, I am so different personality wise now to how I was prior to diagnosis. I resented my body for causing this chronic illness, for making me need life saving surgery to remove bowel. I have, and some may be a little shocked here, become a lot more reserved. I am not as outgoing as I used to be. I have found, due to steroids making me put on 3-4stone, I have lost my confidence too. I do not consider myself as attractive any more, I used to like what I saw in the mirror you know? I have also, thanks to oral Morphine (oramorph – a syrup containing strong opiate painkillers), lost a couple of teeth. I am a shadow of my former self, personality wise. Privately I worry I will never find someone to love me and not be frightened of my illnesses various. I mean, who would want a 12 stone scarred and toothless woman? Not many am sure.

 

IF YOU COULD TAKE ANYTHING POSITIVE OUT OF HAVING CROHN’S, WHAT WOULD IT BE?

I have found several things positive out of having Crohn’s Disease. I know my body better know than ever and no my limits when it comes to certain aspects of life. I have met, and am meeting, some amazing people (roll on the 17th) because of this disease who understand what I am going through despite the fact everyone experiences CD (and other bowel diseases) differently. Above all of this, I have discovered what the best ever toilet roll is – Andrex of course!

 

So there we go, I hope this has enlightened you all.

Until next time xxxxxxxx