This part of M.E

Thesamefourwallsandme…seemed to be rather apt in naming my blog.  This is new to me…so is my newly adjusted life too.  If I’m honest, it is all new territory and I’m completely winging it – making it up as I go along.

After, all, how do you go about survival in a life full of everything you could wish for, yet the lack of ability to do anything with it?  My days are filled with laying in bed starring at the ceiling, or watching the cheesiest thing on the telebox so that I can block out the buzzing and ringing in my head.  Although, I will be honest, I am not truely watching it, not properly, because it hurts my head too much to do so. The light and noise and the power required in concentrating is just too tiring.

This certainly is not how I planned any part of my life…ever. Tedious, mind numbingly dull. Not nourishing, enriching or soul fulfilling in the slightest. But, highly necessary…yes, being what others consider as simply lazy, to me can be what saves me and enables me to have a life, possibly; if I am lucky, one day.

I am one those annoying people who have a list.  Well, I shall say, had a list of things I wanted to achieve…by 30, 40 etc. Until, that is, M.E very kindly came in to my life with a nuclear blast…but a silent one. Limited to the blast zone of my body; ok, not just my body…but every other poor soul who is stuck with this soul sucking condition. M.E does not have any empathy for its victims. It hates me and I hate it, the slimy, seeded, rotten monster. Yet, surprisingly, I also love it.

It’s ugliness has decorum that transpires into a kind of reflection of beauty.  Through the fatigue, continuous fobbing off, lack of research or knowing what to do with you, you find a mighty strength deep within your soul.  A power you never ever could have imagined existed within you.  A type of chemistry inbuilt into your cells, that gives you the determination to hang on to the edge of the cliff, literally, by your fingertips, whilst you pray that somebody, somewhere will find you an answer.

Yet, strangely, you can almost feel grateful for this situation.  You become so aware of the enjoyment and the luxury of the smaller things in life.  Everything you see, seems to have its own aura, as if you view the energy that you longer have. Watching the birds, trees, flowers, hearing the children next door playing and just being a family. Listening to your partner talk to himself as he tries to problem solve his way through your installing “new” spa bath that you bought off ebay for £70 in hope it can relieve some pain.  Each everyday moment, that before you would never have noticed have now become the reason you can fight through your days. For each reason I have to keep going, I am utterly grateful. For the beauty of the world and the lives of others, I am eternally grateful.

…until the next chapter, keep smiling x

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A slightly broken M.E

Today, I am having one of those days, not so much a ‘why me?’ kind of day (as I don’t do self pity) – but more of a ‘please give me a break and a sprinkle of magical fairy dust’ sort of day.

 

Before, I posted about my frustration of not being able to go out to work or sustain a career/job role. Instead today, I’ve been slapped with another beautiful dose of reality.  The subject of which I’ve mulled over, considered and gone round in circles with for the last few years but today as become poignant and is in the forefront of my mind.  Can I become a Mum when I suffer severely with Chronic Illness/disabilities?

 

This whole process is gut wrenchingly painful as no matter what way we turn, life will not be simple and far from easy.  Now, I’ve used ‘we’ as obviously, this isn’t a decision that I can make on my own.  But, as I hit 30 this year, it is a discussion that needs to be brought up, had, had again, redicussed, cross examined, debated and eventually, at some point in time, decided upon.

 

The reason I say ‘decided upon’ as if it is that black and white and so substantially time bound, is simply because the thought of not having my own family is soul destroying for me.  So, if this needs to be the case, time has to be set aside for me to heal and work out how on earth I’m going to spend the rest of my life.

 

Discussions with health officials so far have been non existent.  I believe this to be a telling sign of assumptions being made about life with chronic illness.  As I’m sick and a wheelchair user, it is presumed that I wouldn’t dare to think about children.  But, I’m human, I have a heart and soul and a substantial amount to offer a little person.  Additionally, after hundreds of times playing ‘mums and dads’ I always knew that when I grew up, I really wanted to be somebody’s Mummy and an ambition as great as this doesn’t just slip away quietly.

 

There are mums out there who are disabled or chronically ill and who do a sterling job and would do anything to ensure the wellbeing of their children. On the other side of the coin, there are mums require a lot of help and support as they struggle through life.

 

Adoption wouldn’t be an option to us because of my conditions (they don’t tend to let the chronically ill Foster or adopt) – this further limits our options and leading our choices more towards traditional methods. However, I don’t even know if my body would cope with pregnancy or if I’d be putting the baby and myself at risk. I don’t know if I could carry for the full term, if my body could cope with the extra strain, or if my neuro immune issues would worsen.  I’m not even sure if the baby’s genetics would lead them to a life of chronic illness and/or disability.

 

It is tough navigating through life and knowing if our decisions will be right or wrong.  Is it a case of lead with your heart or follow the line of caution? But then, you don’t want to look back and wonder what if?

 

It is so tough to know what is best, when I was younger and healthy – I thought it would all be so straightforward. Life certainly has evolved since then. Mind you, I did always say that I liked a challenge.

 

Thank you for reading.

Much love xx

 

 

 

 

 

 

 

What do they see?

One aspect of being disabled or chronically ill, that is particularly challenging – is having confidence in yourself and building up a relationship with… well, anyone really.

 

Many people question their self worth – trying to attain if they are ‘good’, ‘smart’ or ‘witty’ enough to be needed or wanted by others.

 

People that have a disability or long term health condition, can often feel alienated from social situations – in the sense of friendships and romantic relationships too.

 

It can be extremely daunting approaching other people to speak to them.  Developing new friendships/relationships can be far too daunting for someone with chronic illness.  Many individuals even suffer great anxiety at the prospect of speaking with their existing friends.

 

There is still a stigma in regards to people with a chronic illness or disability and living a ‘normal’ life.  It is not unusual a person to be starred at, laughed at and/or commented on.  People often forget their manners and treat you as if you are completely invisible.

 

I think it is time to try to find the courage to be who you want to be, achieve the goals you have, encourage one another, treat each other with respect and kindness.  Show concern for the stranger that you wouldn’t normally approach.

 

We seem to be losing the ability to support others, to hold a conversation with new people or to reach out to old friends or colleagues.  I think we have a lot to learn from our own kind; we need to generate opportunities to be together, to share positive experiences and make time for those in need.

 

Forget what you cannot do, go forth and celebrate what you can do. Don’t worry about the judgements of others; embrace who you are and grab opportunities with both hands.

 

 

 

 

 

 

It’s not quite like it was before…

It has been a long time since I wrote my last blog; the last few days I have been feeling particularly anxious and am not coping with Chronic Illness and being disabled.  I seem to live within a constant emotional/mental cycle that oddly runs alongside our seasons here in the UK.

 

The same anxiety seems to follow me and rears its ugly head every few months.  As you may have read  previously on my blog or profile, I was medically retired at the age of 28 with the view of it being permanent.   The doctors/consultants that dealt with my case warning that my health will never improve and my life would never be the same again.

 

The fact that I am ill with M.E, Fibromyalgia, Gastroparesis, Pancreas Divisum, Gallbladder issues, Severe GERD, Intenstinal Dysmotility and the numerous other conditions I have going on inside of me, are oddly, not the most traumatic aspects in my mind.  Nor, is the fact that I’m now a wheelchair user – this comes with the territory.  What frustrates me the most is the fact that I cannot work; in my head I am still me and am exceptionally capable of having a career!  Unfortunately, physically, and in reality, I simply can no longer manage a work life.

 

For me, this is majorly traumatising; for me, this is the ultimate sacrifice.  Being part of what many see as an every day chore – that they would happily do without, was something special.  Going to work, having a role, a purpose, a sense of pride, self-respect and dignity was part of being human.  Knowing that you are part of not just a team of people, but another form of family, used to bring me great comfort, stability and a sense of being ‘safe’ and ‘belonging’.

 

People look at you as if you are inferior when they hear that you do not go to work and have no children.  They think, wow – what do you do all day?  My answer, generally fight to thrive, survive, be the best me that I can be.  Then,  isolated from the find you are excluded from their world  because of their false sense of superiority.  Just remind them that anything can happen to anybody, at any moment – life can be changed.  Be humble.

 

Finding a place where I can belong is rather hard, being housebound is challenging.  The times I get out of the house are mostly to attend doctors or hospital appointments.  Friends that you used to know, have drifted away, not intentionally; everyone has their own life to live after all.  They are busy with their careers and home-life; they have grown older too and their priorities have evolved and developed and their social circles have adapted.  It can be challenging when you feel yourself left miles behind.

 

For this reason, it is essential that you remind yourself  of how much you have gained in life, the memories you gained from special ‘old times’.  It is when you feel at your lowest that you should reflect on all those times you had reason to smile, for it was within those moments that you did belong and have a purpose.  You are who you are because of all those ‘snap shots’ of life.  If you have treasured memories of others, the chances are, they have fond memories of you.  They quite likely, think of you and remember, the same way that you do them.

 

I suppose the point is that you lose a sense of yourself and the situation that you find yourself in becomes quite lonely.  The support system, independence, financial stability you once had, drifts away and you find yourself battling uphill in isolation.  It is important that you do not give up, reach out to people, if you cannot get out of bed or off the sofa, speak to people on social media – reminisce with old friends, create laughter with new ones, and above all, never stop being hopeful. One day, something might become possible.

Self-Empowerment: be you not M.E.

Living with a disability, suffering from chronic illness and being medically retired,  is not the life anyone would choose for themselves.

 

The fact is,  it is tough, there is no way of sugar coating it.  It drains you emotionally, physically, mentally, financially.  Your illness will steal from you, destroy parts of you, eat away at you, ruin memories.  But, it does not mean that your life is over.

 

If you have a long term condition, it is pretty safe to say that your life will never be the same again – this is obvious. There will plenty of occasions where you feel like you are no longer you, as if someone came along and stole your soul – the very essence of what made you, you.

 

It will be horrific, there will be moments where you feel like you have literally descended into hell. You will be full of loathing and jealousy. I beg you to hang on in there with every single fibre of your being.

 

Frequently, you will see the people around you and question ‘why me?’.  This is not self pity, it is part of the natural grieving process.  Part of you will compare the ‘old’  you with the shadow that you have become.   Again, you can work through that, unless you have fallen apart, you cannot put yourself back together.

 

The most important advice I want to give is do not compare yourself to anybody else.  I did it and I promise there is no benefit in this.

 

It comes with the territory that you will hear about, see or meet other people with your condition or another illness/disability with similar consequences as yours.  For this reason, it easy to assume that you are in similar situations and to a certain extent this may even be true.  BUT, every person has their own story – all scenarios will differ, not one person is the same.

 

Therefore, do not create expectations of yourself based on the needs, wants and goals of another person.  Please congratulate them when they achieve, be there to comfort them if they fall – but do not try to be anything other than be you.  You are enough, you have worth, nobody is any better or worse than you.

 

Each person has their own journey. Make sure that your focus is on yourself.  Your performance is personal to you. Life is not a competition.  You aren’t in a race, take it easy, relax, be reflective.  Live your life as the best version of yourself.  Let yourself love and be loved.

 

Expectations of what you can or want to achieve whilst trying to cope with illness and/or disability should be set by you for you.  Have ambition and goals, but do it in smaller steps, if you do not complete an aim, please do not stress, worry or over think it.  Re-set yourself a goal more suitable for that moment in time, work towards that instead.  You can always amend and implement aims in the future.

 

If you fail, it is one more step towards your success. Just keep going, adapt, amend, change.  Take your time, relax, rest, then keep going.  Nobody is perfect, life is not perfect, humans aren’t born to be perfect.  Experiencing the ride, the ups and downs, the forwards and the backwards, is all part of the journey.

 

Ultimately, if you are doing your best, then that is more than good enough. Your path is that of your own, treasure the people that can walk along your path with you, but take the time to look at the view, pause for a while, breathe, draw it all into your soul.  Feel the energy of your life – imagine, dream, hope, keep on keeping on.

Much love.

Kelly.

 

 

 

The reasons I am so angry with M.E

At the beginning of being ‘sick’, it is easy to be guided by your naivety or that sense of hope and determination to ‘battle through’. You tend to get carried away in your dignity and stubborness to remain the person who had always known… this was me five years ago.

At that time, I knew I felt dreadful, like I had never felt before, as if something almost supernatural, had come along and sucked all the life from within me.

However, my idea was to keep pushing – to really stretch what my body was capable of.  There were days when I crawled around on my hands and knees; if I tried to stand up, my legs would give way from underneath me, not being able to take the strain, of what felt like, the weight of an elephant baring down on my limbs. 

A friend at work would walk passed and find me there, stuck, frozen into a crumpled wreck.  My limbs so stiff that I was not able to move on my own.  Looking back, I honestly could not explain what I was trying to prove to myself.  Other than I was bonkers for carrying on that way.

The medical professionals advised me that this was it.  The end of the beginning of my career as a college tutor.  I had been given the diagnosis of myalgic encephalomyelitis or ‘M.E’ for short. ‘They’ wanted me to give it all up there and then. I had only been working within the profession for 2 and a half years.

There was absolutely no way on this earth, that I was going to give up everything I had worked so hard for. One of my greatest concerns was how I would cope financially; I had only been with my partner a short time, I couldn’t share than sort of burden with him – certainly not so early on.  The compromise was made that my hours at work were going to be amended.  My five day week went to four, then to three. I had arranged an assessment at work and I sourced a mobility scooter and other aids to help me cope. I survived like this for a short time.

Before long, my pain and fatigue levels were through the roof. I was working and then sleeping from when I got in. I slept all through my days off and the entire weekends. My routine was not working, no matter how hard I ‘fought’, my health was declining. More diagnosis’ were being given and I felt worse then I ever had.

This year arrived, my attendance at work between January and April was awful. I struggled to manage my working hours and my hours were cut again after periods of sick.

By May, I was off sick again and I have not returned. Unfortunately, nor will I. My health this year has been appalling, as each month of rest has gone by, I’ve felt worse. More pain and mire fatigue.  More discoveries have been made in relation to other conditions and further tests and investigations are underway.

It is so important that when you are advised to stop whilst you are ahead, then to listen.  The effects of pushing myself to beyond my limitations have had severe, adverse and non reversible effects.  I’m still in relapse and every time I feel a bit brighter, my body crashes again.

Due to this, I am housebound. The only choice that I currently have is to rest and do nothing. To try and regain some sort of life. At the moment, I feel a long, long way off and for the first time, I will admit it has finally got to me. I am finding my isolated existance lonely, boring and depressing.

The danger in my situation, is that I have a lot of time to think. To compare how I am doing. It especially doesn’t help when people suggest a ‘routine’.  Unfortunately, for me, the best thing is to ‘ sit tight’ and ‘hang on in there’.  Anything stressful or even the slightest bit energy-consuming, at the wrong moment, can be more damaging than it is worth.

My goals are still in existance, I wilI continue to hope – I still have ambitions and there are lots of aims that I have for myself.  No matter what, each day I dig down deep to find that slice of hope that I had from the beginning.  Without that hope, life is lonely. Plus it has got me this far. My life is limited. I will never know how long I have – not many people do.  Each day, I will take as a step towards doing something fun, exciting and new.  This is my chance to start again from the beginning, to use my flaws, not as limitations, but as tools to work with in order to provide support for others.

No matter what your situation, another human being just ‘gets it’. Don’t be scared to reach out or to go looking for answers.  You never know where your journey will take you. I’m still discovering my path. Hopefully, you will walk some of my path with me.

Keep smiling. X

 

 

 

 

 

 

 

 

 

 

 

 

 

When life reminds you and ME

So this morning many of us woke up to the very sad news that a beloved hero within the chronic illness community had so very sadly passed away. Her age of beauty was 27. I didn’t know her but know people who did and followed her story. I found comfort and solace in her raw strength and unquestionable courage. This lady was never the victim of her illness she used it to empower her fight and belief of helping others and raising awareness for people in her community.

 

I almost feel too much of a stranger to be using her story within my own, but it just reminds me how bloody much I want to still be here and how much I need to have the opportunity to live my life. I feel sick to think that someone so honourable, positive and strong was taken so quickly from her family.  It is awful…horrific…unjustified…but yet these words aren’t how this person would have spoken… she was far too dignified and respectful of her life than to be so cold in thought.

 

It doesn’t matter which illness or condition anyone has, I believe we are all one big fight – one huge community that must need to hold a sense of pride, dignity and live with true courage.  One abundant team that need to work together to get through each day. To remind each other to embrace every single moment, opportunity that comes our way.  We share the worldwide responsibility to pull each other back up if we fall.  To not remain quiet or let others stumble into solitude or silence. To rise up to the challenge of helping others make those magical memories to cherish.

 

To give all invisible people a purpose, a momentum, motivation – to be a soldier and to overcome those soul destroying moments of suffering to be who they deserve to be. To live a meaningful life of love, laughter, to enjoy what is often seen to be mundane – but for many, what could be the difference in being alive and actually living. 

 

If I were not to use this chance to shake myself and think what can I do differelty? I would feel I have let all of these warriors down. How can I change to make sure my existence isn’t just that…an existence; but, a time where I have done something to make others believe in themselves?

 

How can we help our neighbours be the best version of their personalirues and to use every second to do exactly what they dream of? Not wasting away from boredom or loneliness, falling into despair and giving up hope.

 

There is so much to do and enjoy and even when we are stuck ill at home, we can still change the world a little bit at a time. There are still happy memories to be made and moments that others wish they could have too.

 

It is very difficult and I certainly find it so so difficult to be poorly and so very fatigued that using energy is just impossible. It makes me lost and wondering how others do it. But I just know I can’t be here for nothing. I still have a beating heart and therefore, somehow, somewhere I have a purpose and someone that needs a helping hand. I’m not giving up on that person or that opportunity just yet. I will keep doing the little things so that obe day I will look back and all those small gestures of good will and respect for the wellbeing of others, will have evolved into something large and worth the fight.

Keep smiling xx

 

 

 

 

 

 

More than just M.E

Each week my blog will be inspired by something that is meaningful to me at the time. How I feel, a symptom, someone else’s story etc etc.  This week is more linked with toilet talk, but as a result of my M.E. It will be great to gere from anyone that can relate, not just M.E sufferers. I suppose this week, I’m searching for people to share their experiences and offer advice to the rest of us.

 

M.E is more than just it’s own diagnosis. It has so many associated symptoms; and for which simply there is no cure. There are so many horrendous symptoms that we all suffer.  But for me, second to the horrific fatigue, my number one enemy at present is my entire gastroenterology system.  As M.E is recognised as neuro-immune this doesn’t surprise me, but it doesn’t help in the way I feel each day.  I know that ideally we are looking for a treatment or cure for M.E as a whole; however, if I could get my gastro system under control, my life would be a lot more pleasant.

 

It has yet to be confirmed, but there is talk of possible diagnosis’ of gastroparesis and pseudo-instruction. One thing we do know is I have poor gut motility, slow bowel transit, chronic constipation and difficulty swallowing most food that hasn’t been pureed or liquidised.

 

Now I know there are people who shy away from discussing ‘gross’ stuff, toilet habits etc; if you are one of these, this week’s blog might not be for you. Although I promise there will be no illustrations or images.

 

I suppose this week is about trying to find some help, advice and for people to share their experiences of gastro issues.  Not just for me, but for anyone reading who could be too embarrassed to talk body waste.

 

Personally, I suffer with excessive mucus in my throat and in my bowels. I literally feel as though it is clogging me up. I can’t eat properly, it makes me choke, I feel nauseas and I struggle to cough it up and get rid of it. I simply haven’t got the strength.  Trouble is I don’t lose weight, so it is hard for anyone to look at me and see I’m not getting the right nutrition.

 

I live off of beige foods that are mostly pureed down. My love for fruit and vegetables has ended as my body can longer tolerate them. I cannot swallow small pieces of food as my muscles in my oesophagus seem to have stopped working the way they should.  My stomach is bloated, hard and overfull of acid that sits in my throat burning it painfully.  It feels bruised inside but on the outside it is tight, numb and tingling.  I can longer feel my bowels and can only have movements with the help of certain medication as laxatives were beginning to fail. The result of this is chronic constipation, impaction and potentially stretched bowels.  It feels as though somebody is sitting on my chest and have their hands around my throat. I can’t breathe through the discomfort.

 

I would love to find out if there are any solutions, I am on the waiting list of the most amazing specialist, but in the meantime I want to make my life more comfortable.  Obviously this is just a small snap shot with a small number of problems listed but please do comment if you can offer any advice or if you just want to include your thoughts.

 

Thank you for reading and keep smiling x

 

 

 

 

 

 

 

 

 

 

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