Tag: pernicious anaemia

What is dignity?   And why is it so important?

Dignity is a complex state and something that I truly believe that everyone deserves.  Dignity is the state or quality of being worthy of honour or respect

My blog is all about being fabulous despite the circumstances of your life.  Despite the curveballs that life throws at you.  Your dignity is something that is truly integral to your fabulousness no matter what age, gender or circumstance.

A little about me

Over the past five years (and a bit more perhaps) a lot of things have come across my path. I have been a victim of gaslight bullying in the work place. My health as also been a huge struggle, most especially with my arthritis, which has been stripping me of some of the things that I perhaps took for granted.  It is some of these situations that has made me realise how important dignity is.

If dignity has been stripped from you – for whatever reason, it isn’t the easiest thing to get back. Walking tall and acting confident when you are crippled with pain or humiliation is hard.  The first time I walked out with Stan, my trusty walking stick was hard.  Not simply because I thought people would be looking at me and questioning , but because I felt vulnerable.

Vulnerability is closely linked with dignity.

When I feel vulnerable, be it a situation when I had to return to the office after a humiliating dressing down, or when I had to introduce Stan to my date.  I feel vulnerable when I am faced with a plate of dinner that I know I cannot cope with (there are days when I cannot cut my food because of pain in my hands, and many days when I know I will be decorating my clothes with the food that I might spill).  I feel vulnerable when I need to ask for assistance to carry my tray in a restaurant and even on a very bad day when I cannot pick up a cup of tea.

There are days like this – perhaps more than I would like.  After several attempts, trying to get my essential fix of tea, I realised that lifting the cup was not an option.  I asked for a straw which was delivered with a smile and with an attitude that didn’t make me feel vulnerable.  This kind woman understood dignity.

We are all different

No two people are alike and there are many people living with disabilities both visible and invisible.  This month is autism Awareness month and I am delighted to hear of many supermarkets introducing shopping hours where attention has been paid to decreasing light, sounds and other sensory stimuli.  I will certainly be taking note of these.  As a result of my conditions I am hypersensitive and find shopping overwhelming at the best of times.

Invisible disabilities (very like me on a good day when I don’t have my stick or hand splints)  are exactly that.  They are invisible.  These include depression, arthritis, fibromyalgia, lupus, and MS just as a start.  Anybody going about what seems like daily life with these conditions is fighting an uphill battle and dignity is part of that.

So how can we help people to maintain their dignity?

  • Firstly as mentioned above we don’t know who is struggling.  So why not show everyone respect.  It is old-fashioned I know but if you are sitting on a train or tube and know that you are ok to stand, offer your seat.  I promise there is someone who is struggling to stand and maintain balance.
  • Be aware.  It takes so little to hold a door open, to perhaps notice that someone needs a little help, perhaps with carrying a tray or a cup of coffee.  Perhaps allowing someone to go ahead of you in the queue.  These are all little actions that will allow someone to maintain their dignity and not feel quite so vulnerable.
  • In close relationships, family and friends who know what someone is going through it is both easier and harder.  My advice would be to again be aware, be conscious of what things might be difficult, and simply help silently.  I had visitors over the Easter weekend and every day I realised that little things had happened.  My bin had been cleaned thoroughly, the back garden was tidied, the dishwasher had been packed and unpacked.  I didn’t ask for help, but it was given.  And I am so grateful.
  • Acceptance is key.  If there is a person in your life who is disabled in any way, simply accepting them for who they are is a wonderful gift of dignity.  When I was in a new relationship, I was shy about introducing Stan the Stick.  Eventually we were going on a trip and I knew I would need the support of my stick.  I remember asking my Mom.  If he doesn’t accept Stan he isn’t the man for you.  Wise woman!  I just loved the day when he suggested bringing Stan out with us.

 

My tool kit for coping

It may seem odd, but the little things I do for myself to feel better, and to maintain my dignity are important to me.

I like looking good.  I love my fashion and style.  If I am going out (and even sometimes staying in) choosing great clothes, doing my hair and spending time on my make-up give me that added confidence boost.

I also of course rely on the old favourites of pain relief, mindfulness and rest.  A great day out feeling totally dignified has a lot of planning behind it.

Thank you to all the wonderful people who I share my life with.  My friends who know and the strangers who don’t.  Allowing me my dignity is a gift.

 

Thank you for reading

Kerry xx

 

Bellissimo – Everyone has a right to feel lovely

Bellissimo translated into English means lovely.  I strongly believe that no matter where we are in our lives we all should feel lovely.  Sometimes that comes about due to some kind words but sometimes it rests on us to make ourselves feel lovely no matter what is going on in our lives.

Bellisimo pretty mermaid nailsI know for me having my nails done is a big treat.  Due to some of the auto-immune diseases I have and some of the drugs I need to take, my nails are brittle, ridged and dented.  One has a fault and it cannot grow.  Every little millimetre it grows just causes a vertical split.

One of the few things that helps is having a manicure and if I go all out and have a Shellac (two-week manicure) it kind of holds my nails together.  And of course makes me feel lovely.

I was treated to a beautiful ‘mermaid’ themed shellac manicure at a blogger pamper evening held at the very aptly named Bellissimo salon in Galway.  My comment – these nails look so good I might have to scratch someone just to show them off.  Of course there might be other ways of showing them off too.

It was such a fun evening, hanging out with ITWBN bloggers having manicures and pedicures while eating delicious food supplied by the g Counter.  Honestly it was a bit like a grown-up slumber party with lots of giggling and laughing as we had the run of the salon for the night.

Trying on a long glamours dark wig!The biggest laughs of the evening came about when we started trying on wigs.  There were shrieks of laughter as we transformed ourselves into different characters by simply changing our hair.  Loads of giggles.  Wigs however are a medical necessity for many women.

A couple of years ago when I started on Methotrexate to treat arthritis a lot of my hair fell out!  I have always been quite proud of my hair and I can tell you I panicked.  Hair wash day became worry day as the plug hole filled and each stroke of the brush meant less hair on my head.

Thankfully I didn’t loose all my hair, and by using vitamins and other tricks and techniques (which you can read about here), I was able to get back on track.  I regularly trimmed my hair and waited hoping it would grow back.

Many many woman are not as lucky.  Various conditions and drug programmes result in thinning hair leaving woman feeling less lovely than they should be.

As we clowned around in the wig room at Bellissimo I couldn’t help thinking how important wigs are to so many people.  Many of the wigs available look so good, you wouldn’t realise that they were exactly that.  These wigs are well made and although synthetic would make anyone look fabulous – even if they were simply having a bad hair day.

I spoke to  Mike and Dympna our Bellissimo hosts who explained that because the salon was registered with the HSE (Ireland’s health service), there was a contribution that could be claimed against the purchase of a wig if hair loss was medically related.  The staff is fully informed and are happy to help anyone in a confidential way.   You can also have a look at the info on the website. I can promise you that anyone leaving the salon would feel fabulous!

Bellissimo in Galway is a simply gorgeous venue.  I really couldn’t think of a better name for a salon that makes woman feel lovely!

Thanks to the staff and the lovely ITWBN bloggers for having a pretend slumber party with me.  I felt Bellissimo going home.

Thanks for reading.

Kerry x

 

Believe in yourself – we all deserve to feel beautiful

Model for a Day(Including before and after pics)

Believe in yourself.  Rather easier said than done.  I have struggled with self-esteem especially related to body image and my looks for as long as I can remember.

I know it will be hard for many people to believe as I appear bubbly and outgoing but for much of my life I have avoided mirrors and weighing scales.  I reached rock bottom in terms of self-esteem about five years ago.  My marriage was crumbling, my weight was ballooning  and I got to a point where make-up was something that gathered dust in the cupboard.

I remember going to a family function and making a real effort with lots of eye make-up including liquid liner.  My eyes were just not used to it.  One eye started watering and then I managed to poke myself in the eye with the mascara wand on the other and had to start again.

Before and afterWhen I was putting this post together I decided to be brave and include a photo from this time of my life.  I couldn’t find one.  I had such a negative belief in how I looked that I had gone through Facebook and untagged any image of me – just to make sure that nothing ‘ugly’ popped up.

I am extremely grateful for the wonderful people around me who have supported me over the last while.  I have worked hard to reach where I am now.  I have fallen in love with make-up again and I honestly believe that we all deserve to look good.  And, more importantly we all deserve to feel fabulous.

I met Natalie Greer at an ITWBN blogger event a year ago.  Natalie is a photographer and we got talking about boudoir shoots (you now the sexy ones).  It got me thinking about how confident you would need to be to do something like that.

The more I thought about it the more I felt that every woman deserves to feel truly special and in my head being a model for a day would be something special.  True beauty and fabulousness comes from within, I know.  However in the society we live it so much pressure is placed on body image and looks that it is important to feel good about yourself.

For some people this might be creating something, or doing something for a good cause, but for me it included looking good, and more importantly feeling good about myself.

Something new and exciting is happening …

I am also embarking on something new in the career line where I will be combining my experience with some new training to offer personal branding services – something that I really believe in.  The more I researched this, I realised that we are a brand ourselves and our image – photo – is part of this brand.

I felt both brave and excited the morning of the shoot.  I had a little suitcase packed with a couple of outfits and accessories and of course my bulging make-up bag.  As I was driving I looked down at my hands and panicked.  My nails are in a dreadful state.  Due to conditions like pernicious anaemia and arthritis and the drugs I need to take, my nails are brittle, ridged and in some cases very short.

I quickly pulled into a pharmacy and bought myself a packet of stick on nails.  Now I was ready for my photo shoot.

Natalie Greer - Always wear your invisible crownThank you to Natalie, for making it so special, and to everyone who has already liked the profile pic on Facebook.  I love the image with me wearing my crown – it reminds me of where all this started.  My first really well read blog post was all about wearing your invisible crown.

Thanks so much for reading this and for looking at my photos.  I really do appreciate the feedback.

I am working on a blog post about personal branding which will include a free downloadable personal branding questionnaire.  So please check back in or subscribe to the blog so you don’t miss it!

Thank you again for your support on my journey.

Kerry x

 

Pain is my Frenemy

 

Pain

Pain is my constant companion.  It is always with me and after all this time we have become quite well acquainted with each other.

I cannot think of a 24-hour period in the last few years where I have not been in pain.  Some days it is merely a twinge and a twitch, but most days it is a nagging constant.  It gnaws at me grinding me down until I am weary.

I sometimes wonder if there are tiny teeny creatures inside of my bones eating away and snagging my nerve endings until I have to stop and simply sit waiting for medication to kick in.

Each of us feel pain in a different way, and nobody can really know how you feel.

A frenemy (it is a real word), is a person with whom one is friendly despite a fundamental dislike or rivalry.  A combination of a friend and enemy.

Pain has become my frenemy because I cannot avoid it – it is closer to me than my partner, family and friends and although I don’t like it I have to learn to live with it.

The primary source of my pain is Arthritis in my hands.  In addition I was recently diagnosed with Fibromyalgia which is also sometimes called the chronic pain disease.  Add Pernicious Anaemia a blood disorder that leads to neuropathic pain and you have a good cocktail.

This post is not about my pain, but rather my relationship with it.  It is part of my life now, and so I need to make a friend of it (or frenemy).

I am determined that my life will continue to be full despite my friendly enemy.

These are a few of the techniques I am using to deal with it.

 

  1. Distraction

I find that this is probably one of the best sources of pain relief.  The pain doesn’t go away, but as I absorb myself in other activities my mind begins to wander and I am able to deal with it better.

  1. Discipline

I am not always very disciplined but I have found that when I stick to a routine as far as using my splints, taking medication and rest, pain is easier to get along with

  1. Pain medication

Unless I am in a very bad way, I tend to take pain meds when I need them.  I am conscious of my overall health and try to limit what I do take.  Once again however, keeping pain at bay is all about being regular with medications and other pain management aids such as topical pain relief in the form of sprays, gels, Versatis plasters and more.

  1. Sleep

I used to be one of those people who boasted about getting on well with only 6 hours sleep a night.  A wise physiotherapist reminded me that the body heals while it sleeps.  I can honestly say that despite waking in the night in pain, the longer I sleep the better it is.

  1. Pacing

My pain is primarily in my hands and arms which makes things a little awkward.  What I have figured out is that I can do about 40 minutes with my hands without too much pain.  Then I rest – and return to my task a little later.  This has not only taught me patience but it also means that I get things done despite the pain.

My journey with my frenemy pain is exactly that – a journey of getting to know pain and to understand it.  To work with it and not against it.

Each person’s pain is specific to them.  If you have any tips of techniques on pain management I would love to hear about them.

A while ago I was interviewed on CRCFM a local radio station – some of what we discussed is very relevant to this post.  You can have a listen here.

Thanks for reading.

 

Kerry x

 

 

Pushing beyond your limits

Push beyond your limits (2)We all have limits.  I know I have reached mine when I am ‘crying tired’.  It was my mom who first used that phrase.  It really is so descriptive.

Yesterday I reached crying tired.  I have been putting my all into learning my new job, where I have literally hit the ground running.   Throw in horrific traffic problems where it is taking me up to an hour and a half in stop start traffic to travel a normal 20 minute journey. And then for a final flourish add in packing up my home.

In addition to this I had reached the end of my ‘battery life’.  Let me explain, I have pernicious anaemia.  As I cannot absorb B12 through my tummy – and B12 is what oxygenates your blood – I have to have it injected on a regular basis.  I compare myself to a battery operated toy.  Twenty-four hours after receiving my injection I am at full battery capacity.  The couple of days before it is due and I am really run down and tired.

I am not looking for sympathy here, just explaining how I came to reach my limits.

The only problem is that when you do reach your limits sometimes you have no option but to push through them.  I had to get up early this morning to travel to work, put my brave face on and handle the job in front of me.  I had to think up some solutions to my move which is was becoming a logistical nightmare and simply push on.  Giving up isn’t an option.

Today as I am reading the post I am calm.  I pushed beyond my limits – not quite sure how, but I found that extra 10 percent needed to keep going.  I had a great day and am now fully ‘charged’.

Next time I get crying tired, I need to remember to keep pushing beyond my limits.

Thanks for reading my belated Wednesday quotation.  Please feel free to share.

Kerry xx

 

How to find the balance between Yes and No – is YOLO the answer?

Yes (2)

 

As a card holding people pleaser I have had to learn how to say no.

After yet another week and weekend of non-stop activities a friend kindly pointed out that I may have over commitment issues.  I was a bit taken aback, but when I thought about it I realised that he had a point.

If I had plans for 8 in the evening, it was really easy to sneak another arrangement in after work.  A Saturday was fabulous and could be divided up into all sorts of slices.  Breakfast, housework, a craft class, and hour to work on my blog, drinks and dinner.  I found myself scheduling my life away.

Why did I do this?  After stopping and actually staying home for a couple of evenings and thinking about it I realised that it was a combination of being a people pleaser and a serious case of YOLO – you only live once.  I simply want to do everything.

I really do love life and love celebrating life.  If I have to choose between doing something exciting, meeting up with my friends or my sofa – I don’t choose the sofa, no matter how much I know I need it.  Now, there is nothing wrong with living life in the moment– in principle, but we have to have some downtime too.  Our bodies need to rest.

Rest and relaxation is as important as eating.  It is also as important as socialising.  So ultimately it comes down to balance.

I have had to learn to listen to cues from my body and know when a no is better than a yes.

What I have learnt is that saying no is not offensive and it is acceptable.  People do understand when you say no, and you can always reschedule  and plan for another day.

I live with a blood disorder called Pernicious Anaemia.  It is complicated to explain, but the bottom line is that I do suffer from severe fatigue from time to time.  Those are quite often the days when I have to simply say no thank you.

At my friend’s farewell, instead of saying goodbye, he reminded me about my over commitment problem.  Yes, I said and walked swiftly down the road to my second engagement of the evening.  His words stayed with me and when I finally got home at 10.30 that evening and received a text message to say that the party was in full swing and that I was missing out, I said no.

I think that this might be my balancing act that I will live with.  Good thing I enjoyed the see-saw as a child.

Thanks for reading

Kerry x

The power of rest and relaxation

Rest and relaxation (2)

The importance of a sofa day

I am one of those people who try to pack as much living in as I can.  The one thing I seem to struggle with is how to include rest into this life of mine.  This week I learnt a powerful lesson.

I plan my life and try to pack in as much work, play, socialising and self improvement. I laugh about the fact that I have a real job and my hobby jobs (blogging and crafting).  I know I need to rest but, there is a part of me that simply loves life. The famous line from the Dead Poet’s Society lives in my brain – Seize the day!

I landed up at the doctor this week literally shaking with fatigue.  Four days later I still hadn’t stopped and gave myself a bit of a fright when I realised that I was literally too tired to stand up.  It is scary enough that it took four days for the penny to drop.

The Doctor  kindly explained that people who are dealing with what I am dealing with, couldn’t do what I do. The word she used was comobidity (I had to google it when I got home).  Basically it means dealing with more than one disease at a time.

I suffer from a number of conditions including diabetes, arthritis and pernicious anaemia, all which contribute to my tiredness. Methotrexate treatment doesn’t help either, nor pain which makes me tired too.  There are weeks where I am in pain every day.

Using my rational mind I can understand why we need to rest, however, I find it very hard to do.  I just have this burning need to pack as much life in as I can.  This week I learnt a hard lesson.  I pushed myself until I literally stopped.

So today, a Sunday I have rested.  I wanted to share a few lessons that I have revisited some thoughts about rest that I need to remember.

  1. We all need to rest.  Don’t forget that.
  2. True rest is for the mind, the body, the spirit and emotions.
  3. It is ok to switch your phone off and take time out.
  4. A TV marathon never killed anyone
  5. Meditation is a mighty powerful form of rest
  6. If you can, prepare for your day of rest by stocking up on snack (healthy is good, but a little indulgence isn’t the ned of the world either.
  7. Drink lots of water – it gives your system a rest
  8. An early night is a good idea
  9. Listen to your body
  10. Spend a little of your rest time contemplating the good things in your life.  Your friendship circle, your beautiful home and the joy of a day where you can simply do nothing.

I am sure that my day of rest will set up for the rest of the week.  All I need to do now is remember to include rest in my schedule.  Please feel free to share, especially if you know people who forget the importance of rest and relaxation.

Kerry xx

How giving up dieting changed a fat girl’s life

Untitled design (4)

I grew up thinking I was fat.  From day one really.  I don’t know why because when I look at those old faded photos with the white borders, I wasn’t.  But, I thought I was and that’s what counts.

I started dieting radically when I was 13.  I attended a slimming clinic where I was put onto a high protein diet and spent two hours a week a bit like a mental patient bandaged up with electrodes placed around my body to help burn fat.

To cut a very long story very short – I believe that crash dieting makes you fat.  I have through my life probably lost my entire body weight (not a small amount) at least twice.  I have mastered almost every diet known to man and woman.  I am an expert dieter.  I have got gold stars, stickers and even spoken as a motivator for a diet.  And yet as I crept into my forties I was fatter and unfitter than I had ever been.

Now, I know that it isn’t all’ dieting’s’ fault.  I have quite a few medical conditions including depression. Medication doesn’t help either.  I have also suffered from depression for a long time A couple of years ago I started changing my life and this is part of my journey.

Today, I am a little thinner, but a lot fitter – and fit feels good

After a three or four year period where I had just given up dieting (and surprisingly stayed the same large size rather than gaining weight), I made a decision that the time had come to ‘deal’ with it.

What made me so determined.  Are you ready? I wanted to feel sexy and feminine.  Each person will find their own motivator, but this was it for me.

My first step was to make up a mantra.

‘Nothing tastes as good as sexy feels.’

Everytime I looked at a chocolate or eyed up seconds I would repeat it in my head. I shared it with a few people and got varying responses. There were some who said they would go for the chocolate, and there were days I would agree. (and then I ate chocolate, and still do)

The next step was to get an appointment with a dietician.  The tiny lady who saved my life

Seriously!  Both that she is tiny and that she saved my life. Blood tests unearthed two very scary diseases – diabetes and pernicious anaemia.

I have always had this idea that dieticians shouldn’t be too skinny otherwise they might make the fatties feel uncomfortable.  Well my dietician is seriously skinny – but healthy.  You can see it on her face so after my first misgivings I started to listen.

I remember 3 things from that first consultation.

  1. Change only your lunch – nothing else.
  2. Small changes
  3. Have blood tests (including an iron test)

Blood tests unearthed two very scary diseases – diabetes and pernicious anaemia as well as a very low iron count.

I told her my mantra – still not sure what she thought.

The journey towards health started with small changes, primarily my lunch.

She had also said that I couldn’t eat lunch with my work mate.  We had got into a routine of taking turns making a nice lunch.  Which of course normally turned into a silent competition of who can put together the nicest  spread.  Speaking honestly we also rewarded each other with food.

Bad Day = Croissant or a danish

Good Day =  Curley Wurley (a dieters chocolate)

Boring Day = Long lunch with a pudding

You get the picture…..

The first month wasn’t hard.  I changed my lunch and made sure I was eating a protein at every lunch (not the easiest thing for a vegetarian who lived on cheese), and simply kept the goodies for the evening.

When I weighed in a month later I was 9 pounds lighter!!!!!!!!!!!

This was the first step in a long journey which as led to a complete overhaul of my eating habits and of course my path to fitness.

An extra message before I sign off from this post.  Compliment your children and give them a positive body image – I don’t know why I thought I was fat as a child, but after a long while I can look at these childhood pictures and realise that I was pretty and perfect!

Thanks for reading.

Kerry xx

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