What I really, really need.

Some of you may been aware that I have put on a bit of weight since dealing with my severe endometriosis. I've mentioned it a few times...ok maybe more than a few.  It's just not on really. As a bonus for being really, cripplingly ill, I also get the bonus prize that only a quarter of my clothes (the baggy stuff that's now the tight stuff) still fit me.

Today I went to my first exercise class in about eight months. I spent five whole minutes squeezing into my zip-up sports vest, straining to hold the zip together so that I could get it closed. I put on a pair of shorts so tight I felt like I was being sliced up the arse crack.

Still, I made it through the class, which was a great achievement.

And then I got home, and had to get the vest off again. Which brings me to the title of this post. What I really, really need, is someone to call specifically for zip related help.

Just last year, I got stuck in a dress. I actually had to cut it off in order to escape, and it was a harrowing experience. I was not too fat, it was the dress that was wrong. If there had been a handy clothes-escaper to call, that dress would have been saved.

And so, I ask all you entrepreneurs out there. Start a service. Put out some dedicated people who will be there when someone is stuck in a dress, or a piece of ill-advised sports-wear. Do it for all the clothes that people have to cut themselves out of, and for all of us that have nearly dislocated a shoulder in our struggle to be free.

It's the right thing to do.

No one likes a whiner

When you've been ill for a long time, or you have a condition from birth, you really have to be careful who you talk to about it. 

Let's say your back hurts, because you pulled a muscle. The first couple of days, you can get a lot of sympathy for that. If it still hurts a week later, you'll probably find people are getting tired of hearing about it. A month later, you better be cured or dead, because no one wants to listen to that any more. You're still in pain, and it's affecting you, but they are not in pain, and they can't really relate to you. They've run out of sympathy, suggestions, and are starting to think that you're just making a mountain out of a mole hill.

Luckily, there are other places to go to for support. If you keep dipping in to that same well of friends, you're just not going to get the responses that you need, and you'll end up angry, and they'll be annoyed.

If you check around for a local support group, chances are you'll find something, even if not exactly specific to your needs. My favourite place though is this:

Chronic Illness Support for All

I am not a big fan of the internet. I think it lends itself to people being crappy to each other, but groups like the above are a great reminder that people are also there for each other, and there to support complete strangers. That's something pretty cool, and for some, it's a real life saver.

The truth is, you're not whining. You have a right to complain, to be sad, to be angry. You just need to find the right people to help you back up. 

Living on Benefits

Unless you've been living under a rock, you've probably watched, or at least heard of or read about, the people living large on benefits. Making more money than they would from a job.

This has not been my personal experience. I didn't have a particularly high-earning job, but losing it and going onto benefits took a large chunk out of my income.

Because I was on sick leave as certified by a doctor, I got the sickness benefit of £200 per week. My rent alone is £140 per week. So you can already see that I am not filling up a bath with notes and taking elaborately staged selfies of my wealth.

 There were many things that had to be cut from my budget.

No more dresses. I had no job to wear nice dresses to anyway, so that wasn't so bad. I had gotten into the habit of buying one dress a month. I am majorly into dresses. I very rarely wore a skirt or trousers to work. No CDs. No books. No shoes. No fancy chocolates, another favourite treat. No more classes at the gym, or paying for the gym at all. That was replaced by a home work-out DVD. Meals out had to be cut down, as well as doing anything that required an entrance fee or otherwise cost money.

I am lucky in that I have long been a frugal person. I have never had much money, and I do my best to keep out of any kind of debt. I had learned years earlier the secret of buying in bulk whenever you can, and how to successfully shop the sales.

So, next time you see an article stating that all benefits claimants are wiping their arses with original Picasso sketches, I hope you might question the accuracy just a little.

I would also like to impart some of my incredible wisdom.

• Always buy toilet roll in packs of nine or bigger. You're always going to use it, so you'll get through it, even if it seems nuts buying all that loo roll for one person. You'll save £s.

• Never buy anything in the sale that you wouldn't buy if it was full price.

• Don't fall for buy 2 get one free. You'll end up with cupboards clogged full of stuff you don't need, that you purchased because it seemed like a really good deal. 

And lastly, the most important thing of all.  STAY AWAY FROM CREDIT CARDS. Stay away from store cards. Run from online ordering catalogues. Never, ever take out a pay day loan unless it's an absolute emergency.

I hate to end on a negative note, so, still on the theme of benefits, I bring you this cheery little cartoon, and an annoying platitude. Remember, things can only get better.

THINGS can only get BETTER  (click to receive injection of happiness)

 

Your life in two pages or less

About a week and a half ago, I decided with my doctor that I was well enough to go back to work. I still had random pains, and of course my hip dysplasia causes daily pain all on its own, but as long as it's not a job that involves a lot of standing or driving, there is a job out there that I can do. Plenty, I hope.

Because I've been on sickness benefit, I'm entitled to use a free back to work service, where you get to work with advisors. They help you with your CV, with interview prep, and the actual job searching. It was all very new to me, because I had never been out of work before in this way. I was used to going straight from job to job.

I had been feeling a lot of anxiety about going back to work. What did you say to prospective employers? Do you put your time off work clearly on your CV, or do you bring it up in the interview? The consensus seems to be that you don't put in on the CV, but do put it on a cover letter. 

CV's are a minefield all of their own. I hadn't done one for a very long time, and one of the first things that advisor said when looking at it was that the font was old-fashioned. I hope that way back when I wrote it, it was hip, but possibly it was unfashionable even back then. Best not to dwell on that.

Over the next hour or so we rewrote it, and padded it out with some new and trendy buzz words, and then sent it off to three prospective companies.

There is a good side to being unemployed and job-hunting. In the past I had the stress of secretly arranging interviews in lunch breaks, but now I'm free and easy. It's not much, but it's something.

And now...we wait. And apply for a load more jobs, to stave off the tide of rejection emails that will drown my spirits. I must remain positive at all times. At all times. AT ALL F*****G TIMES!

Nailing it.

Guest post: Making the most of your summer

Vacations and holidays can look different for those of us with a disability or chronic illness.  Much of the time all we can see is the extra work that comes along with packing and unpacking suitcases, sitting in a car for long periods of time, and all the extra walking that comes from sightseeing and going from one destination to another. We know because we have more than likely attempted at least once to recreate those picture perfect vacations or those fabulous holiday parties from before our sick days. The problem is that it takes us at least double the energy if not more to do what a normal person could do. And then comes the burn out afterwards. We pushed ourselves too far. Now we have a huge mess to clean up or a long trip home and zero energy left. Then comes the self loathing, or the questioning God, or the berating oneself. Why can't I be like everyone else? Why can't I do the things they can do? Like get the picture perfect family photos like they get? Why do I even bother? I didn't enjoy myself. I didn't have fun. All I did was exhaust myself. Maybe just skip the family vacation.

For many of us with a disability or chronic illness our already overstretched finances need curbing wherever we can and taking a vacation is often one of the very first things that we cut from our budget. Those of us who receive disability know that it is barely enough to cover our needs, and those of us who work may have needed to cut back our hours because we struggle with fatigue or pain.

After working since I was fourteen I eventually quit working full time at the age of thirty two to be a stay at home mom. The daily fatigue and pain I was feeling from inflammatory arthritis, thyroid disease, and fibromyalgia finally got to be too much. Our family lost half of our income in that moment. Vacations were temporarily put on hold. Once we got used to the loss of income and got our equilibrium back we began to take vacations again.

Sometimes we are afraid that where we are going may not have accommodations for our disability. Maybe our disability is slightly embarrassing(think colostomy bag or catheter) and we don't want to leave our comfort zone. What if we are stuck on a plane or cruise ship and need emergency medical help and can't get the help we need? There are so many reasons why vacationing is more complicated if you have a disability or chronic illness. It can also be a little bit scary. I wish I had a perfect answer to calm your fears, to finance your vacation, and to give you the energy to enjoy it to the very maximum of your ability. You have to decide for yourself and your situation what is best, and sometimes you can have the most fun you will ever have in your own back yard.

    ~  Courtney Diggs

Out on the Town

It has now been over five weeks since I had my laparoscopy, and, FINALLY, I am feeling better. After weeks of bloating and hideous stomach aches, it all seems to have settled down in there. I still have occasional random pains, but the constant pain that I used to have day and night has now gone. The pains that I do have come and go in a matter of minutes rather than flooring me for an entire day.

One of my very favourite pastimes before I got ill was to go clubbing every Saturday. I absolutely adore dancing, and there's nothing I like better than to jump around for a good three or four hours. Since I don't drink any alcohol, I can commit to perfecting those killer moves.

Last night, I decided it was finally time to get back out there. It had been six months since I last went out dancing, and the groove needed to be unleashed. I had some panic over what to wear, since most of my dresses are still too small for me, but managed to find a suitable black dress, paired with my knee-high lace-up converse. As someone with hip dysplasia, heels are not really my thing, and converse are ace for dancing. You can get some fancy footwork done when you're not feeling the pinch in your toes or an ache in the arch.

I've heard many a women bemoan the fact that they have to go clubbing in high heels and would love to go out in a flat, comfortable shoe. Well, here's the thing ladies, YOU CAN. Join the flat shoe movement. I can guarantee you'll still have a good night, and men will not run from you in horror because you're not wearing stilettos.

Many years ago, I went to see Glee in concert at the O2, where they performed Safety Dance.

Safety Dance

Watch it, turn the volume up, and get jiggy with it in your livingroom, in your bedroom. If you're in bed, wave your hands around. It's good for what ails you, I promise.

Guest post: The Girl Behind the Smile

I am  46 years old now and have been suffering from a musculoskeletal condition since my early teens,  although back then this wasn't known.  I spent the majority of my youth on crutches or in a cast or dislocating something. So rather than being labelled with a formal medical diagnosis I was given, what I now believe to be, a label that carried a more psychological impact.  I became known as clumsy and was nicknamed calamity Jane.  I grew up with little or no self- confidence, always waiting to drop something, trip over, make myself look like a fool. I became accustomed to being laughed at for being so accident prone.

 

This continued throughout my teens, affecting my confidence, my self-esteem. I hated myself and my 'stupidity', constantly seeing myself as a failure, giving up on things before I'd even started them because I was bound to mess up. 

 

I had my first musculoskeletal operation when I was 15 years old. It wasn't until I reached my early twenties that I started having serious back problems.  I saw several different specialists, had copious amounts of tests and investigations until finally I was told, without any clear diagnosis but, oddly enough a prognosis that suggested I would be in a wheelchair by the time I was thirty! This news would have been devastating to anyone but to a young twenty-something year old about to begin my career path it felt like my life  over.  I fell to pieces, unable to cope or to find solice in anything.  All sorts of emotions were racing through my mind- I felt cheated, sad and so very angry. However I eventually pulled myself together and got back to living and coping with my pain.  It wasn't constant at this stage and over time I noticed the pain beginning to settle.  I was told by another specialist at that time that some prolapsed discs had fused together, hence the lack of pain.  I felt blessed and extremely grateful and soon I was back to normal, working, swimming, cycling, running - all without any difficulty.  My 30th birthday came and went and I carried on with my life, without a wheelchair. 

In 2009 I noticed  things starting to flare up again.  First with my jaw, then my wrist.  I was diagnosed with osteoarthritis and had a couple of operations which rectified the problems and the pain which allowed me to continue again as normal once I'd recovered. The fact I had been given a diagnosis had a positive impact on my state of my mind and my attitude to my condition. 

 

However, the biggest blow of all came a few years later when I noticed my pelvis appeared to be dislocating. For years I attended numerous chiropractors and osteopaths, they would pop the joint back in and I would carry on as normal.  It became part of my lifestyle,  a dislocating pelvis,  easily sorted by manipulation and then back to normal again for me. Don't get me wrong here, it wasn't as easily dealt with as it sounds.  Silently I was aware that I couldn't carry on like this forever and there was certainly no signs of it rectifying itself,  so I was inwardly battling with this whilst externally trying to hold it all together in order to carry on being a nurse by day and a mother, wife and housekeeper the rest of the time.  By 2013 my pelvis was dislocating daily and becoming very painful but at this stage I had learned to pop it back myself so I kept on plodding  until one day at work it popped out and didn't pop back into place again.  The pain was unlike anything I had ever experienced before.  I don't remember much of it after that as I passed out and the rest was rather vague. That experience was so frightening and was what made me realise that I needed specialist orthopedic attention. 

 

Moving forward to present day,  mainly because the 3 years that followed were a đrug hazed period of my life where my condition deteriorated rapidly whilst I had,  yet again,  copious tests and investigations.  I spent my days and nights drifting in and out of sleep due to the high levels of prescribed medications which I had to take to try and find some form of relief from the debilitating pain I was experiencing. 

 

I guess looking back I could say that the day I was finally given a diagnosis was a day filed with a storm of emotions. It was a rough storm but like any storm you know it will eventually pass.  The storm was the diagnosis that hit me like one massive wave after the other - severe hypermobility syndrome, osteoarthritis, degenerative disc disease, prolapsed discs, scoliosis, severe ligament damage leading to an unstable pelvis and sacro-iliac joints. The mention of operations to my spine and pelvis  which could rectify some of this and relieve the severe pain was the calm that could follow this storm. 

 

My whole life, my families life, my career, all had been ripped to shreds over the years and although I knew that having these operations wasn't miraculously going fix it over-night there was no doubt in my mind what my decision had to be.  

January 2016 - the storm finally settled and the sea became calm again.  It continued so until April 2016, then the storm returned,  only this time I was prepared for it.  I continue under specialist care,  recent investigations indicate further spinal deterioration.  However,  I now know that pain is going to be part of my daily life. As with any storm, some are worse than others,  the difference now is that I am learning to ride the waves. I go with the ebb and flow.  Most of the time I see pain as my companion, it can however be my demon also. Most of the time I embrace it and work within the boundaries that my body allows. Some days it overwhelms me but, as hard as I try, I can't find the strength, desire nor inclination to cope. Those days are dark, filled with profound sadness, loneliness and self -pity. 

 

Always in my mind I remain conscious that there are others worse off than me and I do give gratitude,  despite how low I feel, but it still doesn't stop me from curling up on the sofa and feeling sorry for myself. I reckon we are all allowed to have days like these. 

Over time you try anything to rid yourself of the demon that is pain. I have reached a point now where I know that when I wake each morning and allow myself to focus on the pain then it is almost like giving my mind permission to allow the demon out. Instead I try my very best as soon as I wake to acknowledge the feeling of pain but, as difficult as it is, I try not to dwell on it. I get up, sort my children out for school and when they have gone I focus on myself. I allow myself to sit for a few minutes and feel my pain.  I then set my limitations for the day knowing the severity of that days pain. 

 

It has been such an emotional struggle, and still is, to come to terms with the fact that in order to function to some capacity on a daily basis I have had to re-think my life,  to start to make changes that suit my 'new' needs. I have had to change my dreams, reach for different goals and acknowledge that it's ok to ask for help, but most important to recognise that I am still me.  I may be limited physically but I still have love in my heart, a rhythm in my soul and an abundance of life energy to keep my spirit strong, happy and ambitious to reach my new goals. 

Deirdre.