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.

Revenge of the laparoscopy: part two

So way back on the 23rd of May I had a laparoscopy. This was to look into the chronic abdominal pain that I have been suffering for more than a year. I had already been x-rayed, MRI scanned, and had two exterior ultrasounds and a rather uncomfortable inner one, AND had a gastroscopy. So by this point you could say I was pretty committed to finding out what was going on in there.

Afterwards, I started to bloat up. All normal, part of the process, it will soon go down...so I was assured. This however, is not what happened. For three weeks, I continued to inflate. I could no longer wear any of my trousers, shorts or even skirts.

Out in Paphos, I decided to wear a bikini anyway. If anyone made a rude comment, I was just going to accuse them of committing a hate crime against a disabled person. I'm kind of sad that I still haven't had the opportunity to use the rant that I had planned.

I felt nauseous every day. As if I was full of food up to my neck. I just had to stop eating completely. In the end I had to turn to some strong laxative tea, having got nowhere with pharmacy recommended windease tablets, peppermint tea and fig juice.

It's now nearly one month after, and my stomach has gone down. It's still not as flat as it was, I think there's a new layer of fat on there, but at least it's not as tight as a newly-inflated football.

The real question is, did the removal of my endometriosis cure my pain? The short answer: no. I still have times where it feels like someone is stabbing me in the side with a rusty spoon. But I don't have all the fish-hook pulling pain, so there has been progress.

 I saw one of my doctors yesterday, and they were very pleased with how my scars are healing. Well ahead of schedule. Thank you aloe vera. Now I have to go for more blood tests, and give a few more samples....enough said.

Hope all my readers are enjoying your day, in sunshine or rain, good health or pain, we're all getting through life one day at a time.

Never fear, Lisa is here! Normal service will resume.

I've not left you forever, I have returned, singed around the edges, tired, probably dehydrated from long hours in the airport, but mostly intact.

All four flights I took for this holiday were delayed. That's a serious amount of time spent in airports. I think I have waiting down to an art form now. The key is to cover small amounts of the airport in stages, taking extra time to have a sit, drink some water, and try to read. Avoid looking at the flight time screens, as these will only frustrate you.

Paphos was beautiful, more so than I remembered from my trip there 3 or so years ago. Everywhere there were trees in blossom, in white, pink and red. Every day the sky was empty and blue, the sun shining fiercely.

Days were spent reading by the pool, swimming when it got too hot. I managed to finish 9 books, a feat not done in years. I think this was aided by the very limited access I had to the internet, which I think was wholly a good thing.

Even with repeated applications of factor 50 lotion, I have slightly darkened. I don't tan well, but there's definitely some change when I look at the parts covered by my bikini, namely my very white bottom. Now I am home, and the sky is totally white with clouds, and it's going to rain any minute, so that tan will soon be gone again.

Still, I'm sitting in my lovely little flat, with all my comforts, and it's not bad at all.

Jean shopping - a woman's worst nightmare

Before I became horribly ill and started taking to my bed a lot, I used to be fit. Not just regular person fit, a person on their way to making fitness a cornerstone of their whole life sort of fit. I swam twice a week, I walked everywhere, I did zumba, rollerskating, badminton, dune trekking. And I loved it.

Since my operation on the 23rd, I have lost all control of the size of my stomach. It has now taken over. Half of my clothes don't fit, and those that do feel unflattering and tight.

Just before I am due to go away, the one pair of jeans I could still get in to has split at the thigh. Disaster. I went out to buy another pair, but of course all the jeans currently on sale are horrible, and not what I want. Worse, they don't bloody fit. As I kept getting larger and larger sizes brought to the changing room, I had a mini meltdown.

It did not end in me buying jeans. I'm going to sew the old ones up, and continue to wait for my stomach to stop being a blimp.

1000 views!

Thanks to everyone reading and sharing this blog, I have now reached 1000 views! I hope some more of you will send me emails, and if you're thinking of doing a guest post I would love to hear from you. Have a great day all. x

Sun, sea, and absolutely no sex

For the next few weeks, you will notice a distinct lack of blogging. That's because I will be sunning myself in Cyprus.

This is no club 18-30 wild holiday though (more's the pity), this is a sophisticated family gathering.

Since I'll be hanging out with my parents, a few aunts, an uncle, and a grandmother, I'll have to dial back my rage-against-the-machine demeanour and generally behave myself.

The parents are hopeful that some sun and general lounging in the sun will help to restore me to health. I think there's certainly no harm in trying that approach.

In honour of this holiday, I have purchased several bikinis, and intend to spend my time swimming in the private pool, sunbathing, and sleeping, with the occasional forage for food. If necessarily, I will play the invalid card to ensure that food is brought to me by a helpful family member.

My laparoscopy scars have healed up nicely. I think that's in no small part thanks to my religious application of aloe vera gel. That stuff is miracle cream. Rub it on everything. Though even if they are still in evidence, who cares? Better to have a scar than endometriosis growing away inside. The most annoying thing has been the bloating. My stomach has been like a football, and is just starting to get back to its old self. Really they should give you an after-surgery corset to help you fit into your clothes.

Guest post - When Chronic Illness Threatens to Steal Your Joy

   Joy and Illness seem like two words that shouldn't even belong in the same sentence together. They seem incompatible, like laughter and pain. I promise you though, you can live a life of chronic illness and even pain, and still have laughter and joy.  Not every moment. Everyone deserves to break down once in a while. We chronic pain sufferers even more so. But we have but one life to live and I plan to enjoy it the most that I can.  See, I knew something was wrong about eight years ago. I would come home home from work, plop down on the couch and hardly be able to get up again the rest of the evening.  I would wake in the morning feeling worse than when I when to bed the night before.  At this time I had no health insurance so I put off going to the doctor. It wasn't until I started sweating profusely and trembling violently that I finally went.  I was soon diagnosed with Fibromyalgia and Graves Disease (Overactive Thyroid).

Things kept changing for me, evolving, and soon my joints were burning. First my lower back and hips, then my shoulders, ankles, feet and hands.  Not too long later I was diagnosed with inflammatory arthritis, chronic migraines, and clinical depression.  

 

Pain soon became my close companion.  John Green was really on to something when he said "That's the thing about pain. It demands to be felt." Pain is continually bringing your mind back to the problem. That's the way God designed it.  Pain is a signal to bring your attention to a problem in your body that needs to be fixed.  But what if it can't be fixed? What if even doctors don't know how to treat your diseases? What are you left with? Pain. Your left with continual pain that is demanding you feel it and think about it. What happens when you are always thinking about your pain? You lose your joy, your love for life.  Here are a few of the ways I have fought to keep my joy.

 

Know your limitations. I would be lying if I said I wasn't still working on this.  I have, however, been better at setting boundaries for my children.  They now know that the mornings are a very painful time for mommy because my joints are stiff and sore and because of my fibromyalgia fatigue.  The boundary I have set for them in the morning is that I get at least one hour to myself to drink my coffee and to wait till my pain medicine kicks in and starts working.  They know not to disturb me or to ask for favors during this time.  Having autoimmune diseases leave you with probably less that half the energy a normal person has to work with during the day.  With three kids to take care of I almost always overdo it.  Many times by eight in the evening I am exhausted and can do nothing besides rest.  I also only plan one activity a day. Sometimes grocery shopping is all that I have the energy to commit to.  So I know that if I need to go shopping and someone asks me to do them a favor that requires lots of energy I just have to say no.  I cannot give what I do not have.  

 

Having a chronic illness or being disabled may require you to set new goals or dream new dreams.  If you had asked me ten years ago what my goal was I probably would have told you I wanted to be a business owner.  Now? I just want to be the best wife, mother, homemaker I can be.  You may have to change your life goals up now that you are ill but dreams, goals, and hope are so very important to your happiness now.  It gives you something to work towards, something to look forward to.  What am I trying to say? Never. Stop. Dreaming.

 

If there is something in your life that your are discontented with, make a change.  If your doctors aren't giving you the help you need, switch doctors.  My rheumatologist had tried only one drug for the arthritis is my joints, and when I told him it wasn't helping, he shrugged and told me that was all he could do for me.  This, to me, was unacceptable.  I have three children who depend on me to raise them.  I need to be able to get around as easily and pain free as possible. So what did I do? I switched to a new doctor who tried a different medicine for me that worked better.  I didn't want to do it because I had been going to him for five years and the next closest rheumatologist was over an hours drive away.  But only you know what you can and cannot live with and there are some times in life when change is necessary.

 

Don't tolerate negative people.  You know the ones.  The ones who are always criticizing you and everyone else.  I can't count how many times I would like for certain people to feel what it feels like to live in my body even just for a day. I had a family member that believed fibromyalgia was a made up condition.  She said I was fine and needed to go back to work.  I cannot tell you how angry this made me.  She really had no idea the internal hell I was going through on a daily basis.  I couldn't change her but I could change how much time I spent around her and I cut it back tremendously.  Judgemental people who only have time for you when they need you and expect you to drop everything at their whim have no place in your life healthy let alone unwell. Life is hard. It's hard well. It's even harder sick.  Do yourself a favor and be a friend and have friends that build each other up instead of tearing each other down. 

 

Don't forget to thank God for your blessings.  Sure your health may be poor but I'm willing to bet there are many good things in your life also.  There are blessings all around you if you will take the time to stop and look.  I do realize that we all have bad days sometimes.  Maybe we slept poorly or maybe we are in pain.  When all else fails I think you should do what you can to take your mind off it. Read a great book.  Snuggle and watch a scary movie with your favorite person (or pet!). Soak in a hot tub. Get out and do something fun with your friends.  Whatever it takes to get your mind off your problems.

 

Don't forget to invest back into yourself! Just because we are unwell does not mean that we aren't still women. Get your hair and nails done, put healthy food into your body and watch it transform into a slim new you! Buy yourself a new outfit.  You will feel better about yourself and you will find some of that joy and happiness that has been escaping you lately.  Just don't forget that you are still a women and you deserve to take care of yourself just as much as anyone else.                     

 

    ~  Courtney Diggs