Thursday, 18 September 2014

As it is the truth

As it is the truth let me tell it
As it is the truth don't you judge me!
As it is the truth I have to live it
As it is the truth just let me be!

Wee poem i just thought of. May add to it but really it sums up perfectly for me the unbelievers in Chronic illnesses that surround me. So easy for others to judge and think you lay around all day and define the word lazy. Often though we are our worse critics as in we believe those things too. '' I'm lazy, unmotivated, heading nowhere fast" and the list goes on... We can sit or lie there thinking maybe all the "haters" are right.
Well the truth is they're not right and neither is the negative committee meetings in your head. Chronic illness is real, I know I'm not making this illness up. My health is rubbish, this week proves it with all the inflammations raising their ugly heads in my body, and especially the costochondritis ( chest wall muscle)  inflammation that grips you with panic at times when it prevents you from getting  a deep breath. I would love to be out working, learning to drive, catching up with friends, getting to grips with the housework and doing the things I really enjoy doing! I would much prefer that than struggle with a Chronic Illness, so just go ahead and judge me if you like!!!

Monday, 12 May 2014

Twas the night before May 12th

Twas the night before May 12th and all through the house not a creature was stirring , not even a mouse...well not technically true, I was tossing and turning and my husband was snoring!

There's never a quiet night in our home, I try to settle into a good nights sleep but it doesn't often work that way. Either I am not able to sleep for ages or I start out well and am awakened by my own aches and pains later in the night. Also of course there are all the toilet visits as well. Then there's my husband and his snoring and his pauses in breathing and his gagging and his sometimes running to the bathroom to get sick.

You see in our house there are 2 people suffering from a Chronic condition.
As you know I have ME and Fibromyalgia but my husband has recently been diagnosed with Severe Obstructive Sleep Apnoea and Fibromyalgia. So as I say 'we're a right pair all together'.

I used to have a carer, that was my husband but at the moment its like the blind leading the blind here in our wee cottage in rural Co. Down. Our son puts up with so much from us,,he's a star and will only be 9 at the end of the month.
All appears to be miserable in our home and at times it can be but that doesn't last long. You see my hubby and I have the ability to trudge through each day. Our faith in God helps us trudge through and every step of the way we enjoy our son's laughter, play with our cats, talk to our hens, breath in fresh air, admire our flowers in our garden and the list goes on.
I also shared in my last post how I split a difficult day up and take one moment at a time. Well my hubby and I do this together every day! we have to we've no choice.

How it works on a practical scale is that we compliment each other, i.e. while hubby irons the school uniform I am trying to put something together for my sons lunch. While my hubby peels the vegetables, I then supervise the cooking times of the steamer and oven, we then  put the dinner out together and our Son gets involved too. So its a real team effort, and it couldn't work any other way.
So for May 12th International ME/FMS Awareness day I hope this has given you an insight into a couple with chronic illnesses persevering together.

And to end on a funny note, my son has just returned from school, it had just poured hailstones and rain and he came in soaked. Daddy was drying his hair and then the cat came in soaked so we decided to dry the cats fur too. So after the fiasco of trying to dry the cat,,we both commented how terrified the cat had been of...the ...could we find the right word,,no; While hubby said 'hoover', I said 'iron'. To put you all at ease it was a hairdryer..we are in stitches right now and life is

Wednesday, 7 May 2014

Exhausted and its only 7th May!!

Hi everyone,
As I slump over my keyboard I wonder when will this exhaustion ever end! But I know if I think like this I'll never be able to put one foot out in front of the other both physically and metaphorically.[Now there's a big word for me today lol]. My head feel like its stuffed with cotton wool and nothing else, my body feels like its been run over by a bus and my core temperature is fluctuating from one extreme to the other.
The only way I can deal with a day like this is to split it into 3 shifts; Morning, Afternoon, Night. Then I split my shifts into hours and then half hours. So I only need to get through the next half hour, if I make that then I'll handle the next one. And so by the end of the day I'll realise I made it and well done me !!!All of this is done mentally of course to help me cope with this Chronic illness.
I knew that going out Monday would wreck me but really why do we have to pay for having a family day out.?? While that has wrecked me then we got the news yesterday that my hubby isn't allowed to drive due to a diagnosis of OSA Obstructive Sleep Apnoea until he starts treatment; which is who knows when? So stress has impacted me physically. I wish my body wouldn't do that. [rant over]
So far in terms of awareness May is going well, I started posting an image with words on it and a comment on my Facebook page everyday and on my support group page. Delighted with the response in general. But the greater thing is I know that a lot of non-sufferers are reading it on my profile and that's a success in itself!!
Its so good to see awareness plastered all over social media and so may it continue. On the 12th May people will not escape awareness, between thunderclaps on facebook, twitter etc, Blog bombs, image sharing, status sharing and the list goes on.
I'm glad to be part of this,,it makes days like this better knowing that we are fighting a battle to make the world see we are not invisible!!
Stay tuned for more posts soon. xx Elaine

Tuesday, 8 April 2014

Battles worth fighting !

I coordinate a support group locally where I live, for fellow sufferers with ME CFS and FMS. My hubby and I in the desire to have more contact with people who had similar Chronic conditions and wanting to support others as best we could started the group back in May 2013. We had wanted to start a group for a while but it wasn't until I found the group FMS/ME /CFS awareness Ni did that become a reality. David Moore had started this closed group in Jan 2013 and had started a support group in Limavady (near the north coast of Northern Ireland). The Facebook group was great where you could chat away to others, ask questions and feel normal.

As David and I chatted about chronic illness issues and running a support group, I became more confident that it was something my hubby and I could start down here in Co. Down in our locality. So we plunged right in and started holding meetings in the local town. I love being part of the group and it's been amazing the amount of support the group gives each other and the honesty of fellow sufferers is a breath of fresh air.

It has been hard at times to keep gong with this but as time has gone on our motivation increases and the rewards are fully seen as we have seen great opportunities to raise the profile of ME ,CFS and Fibromyalgia through events and local newspaper coverage.

Our latest opportunity was just two weeks ago when we were invited to the local council in Banbridge,,,,for a reception hosted by vice chairperson of the council Hazel Gamble. With a bit of liaising with as many people as we both knew suffering from ME and Fibro we managed to get a crowd together. Everyone was really looking forward to the night.

We had a surprise visit from the health minister of Northern Ireland Edwin Poots and he said a few words at the beginning . We then had a lovely meal,,, followed by my favourite dessert pavlova. Hazel organised for some of us to share our stories. Everyone spoke from the heart,,,I was the last one to speak and was so nervous that I nearly collapsed at the podium. I shared my own story but also shared that it was time we saw these chronic illnesses in the public domain and urged everyone to do as much as they could to raise awareness for 12th May,,,International ME/CFS/Fibromyalgia awareness day. Hazel ended the evening off with the perfect opportunity to thank her Mum and Dad who were present for all their care and support when she was at her worst with ME.

I was exhausted after that night but the battle was worth it. We got our photos in the paper and more awareness has been raised. Councillor Hazel Gamble  was approached to write her own story and did a great job sharing it in a local paper. All it takes is a few of us to stand up for what is right and name and shame these  chronic conditions. It is then that people will learn and realise that this is real life. We couldn't make up the stories of our lives even if we tried,, this is the reality of our suffering. Time to make these chronic conditions visible!!!!

Monday, 31 March 2014

So what happens after a diagnosis

I was relieved to get a diagnosis in 2011 of ME and then later Fibromyalgia. To be honest though complete disappointment and disillusion set in when I realised that there was very little my doctor knew about either illness and very little in how to treat me. So to begin with I was prescribed just some paracetamol to deal with throat, ear infections and the like. But when fibro came into the picture I was prescribed a load of different meds by the doctors, all which have not helped in the long term.

I just felt "left" meaning left; ignorant, lonely, unanswered and abandoned by the medical profession.
I had suffered for years up to this with IBS, PCOS, diabetes type 2, bouts of depression, anxiety even early onset renal failure and all these could be treated in some way with medication and or diet modifications. So why not a chronic illness?? Sorry there's no cure they said. The words 'THERES NO CURE' are hard to hear and hard to handle.

In my husbands and my dismay we persevered with the doctors to seek more medical professional help. So I was referred to city hospital Belfast to the chronic fatigue clinic there.  But to be honest while the consultant was lovely and put you through every test under the sun to make sure it was nothing else. Good process of elimination  diagnosis was all it ended up being. I was put through loads of blood tests, xrays, CT scans , head MRI etc...And in the end with no follow up because the clinic closed down. Now there's another story for another blog.

Having a chronic illness is hard to accept, I have gone through very dark times with it and some days it is easier to handle than others. Not that easier really is a word we ever use...but in blog posts to come I would like to share what those good and bad days have been like in the past and also in the present

Monday, 24 March 2014

So whose an expert??? Part 2

And the story continues....
I managed to settle into a admin job in 2003. During the next few years I was diagnosed with polycystic ovarian syndrome and we thought we, d never have a child. But in 2005 we were graciously granted a wee baby boy. (I,ll  write in another blog all about that experience) From then on my health continued to be as bad as ever but I had managed to keep working. In saying that there were plenty of difficulties in keeping up with work. I was off sick a few days every month. Thankfully I had a decent boss.

In 2008 we thought we had found the source of all my problems when I was diagnosed with type 2 diabetes. To be honest the diabetes was more a wake up call to what i was eating and made me change some bad habits slowly. In my mind though I thought there was still more to my health issues. I was very stressed with work and terribly unhappy at my quality of life. Coming home in the evenings I was ready for bed but I was a mummy and a wife and had to keep going as you do.

Being as unhappy as I was I needed a fresh start and in 2009 we had an opportunity as a family to coordinate a new community project in Co. Tipperary ( no singing now lol). So after much thought we moved down from Co. Down to Co. Tipp which was all a bit stressful to say the least. The house we moved into was a mess but we managed to sort it out and make do; apart from the water that looked like iron brew but definitely didn't taste like it. Our job became very stressful  due to communication breakdowns between committees, directors and trustees and as time progressed there my health began getting worse. Within 14 months of moving down the project had lost it's funding and we had to return home. By then I was continually getting skin rashes, sore throats, swollen glands, colds, exhaustion and flu like pains all over my body.

I remember us returning to Co. Down in one of the worst winters in January 2011, the move was horrendous,, I hardly had energy to pack but to be honest my hubby did most of the packing and moving. The thoughts of starting all over again was overwhelming. When I still think of the whole event my stress levels rise. As soon as I came back I was going to visit the local GP clinic regularly. I was given a few rounds of antibiotics and a few other tablets for various ailments. By Mach that year,,I just couldn't take anymore and went to see the doctor to try and finally sort this out. I used the word stress and she agreed and I was advised to try and remove the stress from my life. Now how does one do that???? But I came home very frustrated and that week I decided to write down every symptom I was having and then it was me not the doctor who got the fact that all my symptoms weren't rooted in stress but in an extremely fatigued body. So I went back with my list and said " I DO NOT REMEMBER THE LAST DAY, WEEK, MONTH OR YEAR THAT I HAVE FELT WELL OR ENERGETIC". At long last she listened and said that I had CFS. Her explanation was that I was suffering from Chronic fatigue which was the new name for ME which is also referred to as the yuppie flu. While her explanation was by no means perfect and the yuppie flu bit peeved me off considerably,  I was delighted to get a diagnosis. A little while later I was diagnosed with fibromyalgia as well because pain levels rose within my body, I became so stiff with aches and pains...

In the next blog I'll tell you about the exhausting process of getting further tests.... All fun.

So whose an expert?? Part 1

Hi everyone, finally figured out how to blog from my tablet,,, found the app.
I am struggling! I want a break from this illness,, have you ever wanted a holiday from your body?? Well that's how I feel today,,, actually I feel that way often. I am thankful for the support I get from my hubby and my son but one circle of people who I've rarely got the support I need is from the medical profession.

Until 1999 I had rarely gone to doctors unless it was something obvious like a sore throat or ear infection. I guess the reason why was if I felt ill, lethargic, fatigued, depressed or whatever; it was because of my weight problems! Well that's what I was always told by people I trusted. While I knew my weight never helped it definitely wasn't what was really wrong.
I persevered that year and managed to survive a year of bible college. But that same year as studying my future hubby and I arranged our  wedding. We got married at the beginning of July and my health problems deteriorated even further with increased episodes of flu like symptoms. I increasingly found it difficult to attend college and as for course work it just wasn't happening. On the insistence of my hubby I went to the local doctor a number of times and as my glands were swollen everything was put down to tonsillitis. Anytime I questioned the other symptoms particularly the fatigue side of things I was informed it was because of my obesity. So I was pumped with antibiotics which were making no real difference.
I remember coming up to the end of the academic year and having to admit that I wasn't going to be able to finish all the assignments I had already got extensions on. I cried my eyes out with my tutor and he was very understanding. I was granted an indefinite extension and by the next year I managed to get the work done and succeeded in getting my diploma. Looking back I,m amazed at the college's grace and also my determination to get that diploma. Most importantly my faith in God really has gotten through all these years.

Because I continued to get tonsillitis I was given a tonsillectomy in 2002,, which under anaesthetic nearly killed me as my blood pressure dipped too low. Thankfully after an extremely painful recovery I actually survived it. But this didn't make a difference to my health, actually I believe it made things worse as I had more swelling  in my neck glands and under my arms. That year I actually attempted to do some supply teaching but that was a disaster,, I was in tears in the morning before going out and then by the evening I was beyond exhaustion. That was a really hard time for us as a young couple,,, I didn't understand what was going on with my health let alone my poor husband. I felt so useless and felt everyone around me Just thought I was fat and lazy!!

Thursday, 20 March 2014


Hi everyone, its Thursday and I am feeling so weak today but I thought I would write a brief post on the next phase of my life's journey.
I amended the year in the previous 2 posts to 1999 as I was declaring it to be 1998 when I got ME, but that was the chronic illness fog attacking..LOL
I mention the year only as part of my story, not to boast that I have a chronic illness longer than you or that somehow I am an expert at this by now. As if its something to be proud of,, which its not just to clarify.

Anyhow the year was 1999,,I was in my last 5 months of my term in Ukraine. I got the flu, well it was worse than the average flu which is really bad at the worst of times. It was a strain of flu that was causing a number of deaths in the area. I got it real bad and living on my own it was a challenge to try and look after myself. I remember going back to work too soon and losing my temper with one of the students I was working with because of a disagreement and collapsing in a flood of tears. I never felt fully recovered and started getting flu like symptoms every 6 weeks. I had already decided to return home for good that summer so that was a relief really as I felt I had followed through on my commitment to stay in Ukraine for 2 years.
When I returned home I had already committed to going to Bible college in Belfast for 2 years. That summer of my return was very emotional. I was utterly exhausted. The one thing that kept me persevering was that I had met the love of my life in 1998 on a visit to my sister in Belfast. Without him I don't know if I would have survived that summer of 1999 in one piece. He has been the one to stop me going over the edge on various occasions.

And with those soppy thoughts in mind I will end here for now. In my next instalment I will share the nightmare of going from one medical professional to another until I got finally diagnosed in 2011.

Wednesday, 19 March 2014

Putting myself out there is scary- a Brief History

I was glad I started blogging yesterday. It was scary to take the first step but I did it and appreciated everyone's encouragement.

I always had a predisposition to being an unenergetic child and I was always in trouble with Mum for being lazy. But looking back I realised that there were days I could conquer the world and other days where I simply couldn't do all that was expected of me. I found school, primary and secondary education a hateful experience and I remember particularly getting in trouble with teachers for yawning. But it was yawning for no reason as I went to bed on time and ate a good healthy farming families diet!!
I used to stress out about any sort of test or exam where I had to run to the toilet many times before each event. I was also a very emotional child and teenager and felt treated unfairly by life. Despite all that I managed to get through school and amazingly passed all my exams.

There was always that underlying physical , mental and emotional fatigue that followed me around. This continued on through university as I bizarrely studied to be a Primary Ed Teacher. I know writing that last sentence has me laughing out loud. Well it was the one of only two options I was allowed to choose from according to my parents desires for me.!!The other was nursing.... ;)
Teaching practices were a nightmare as I hadn't the energy to persevere under pressure. But amazingly I managed to get through college and succeed in obtaining a degree. Go Me!!!

I remember my first year teaching, I was utterly exhausted, getting up in the morning was a nightmare. I remember having to try and motivate my self and put on that 'I'm alright face' before I met the other teachers. I dreaded the kids coming into the class. I would cry on my way home in the afternoons from exhaustion, I couldn't think straight, often I missed my bus stop, or missed the bus completely. I just didn't have any stamina for teaching children. My parents or friends never got it and I couldn't explain it either. Because of my fluctuating weight problems, most people put it down to that and I believed it too.

The following three years I did something completely different and worked with a Christian student organisation; in Dublin for one year and in Ukraine for two. I worked as a support worker.
I loved this work and my experience of living in Ukraine was amazing. I think because I loved the work I did I was able to handle any exhaustion better. I made sure there was a complete day I slept mostly.
So this long story brings me to 1998 where I claim I got M.E....

And now as I'm wrecked I am going to leave you in suspense as to what happened in 1999. In my next blog I'll let you know....

Tuesday, 18 March 2014

First attempt at blogging

I decided it was time to start writing . I love writing but I have procrastinated for far too long. I am married 14 years this year and I have a son age nearly 9. I have suffered from ME since 1999 but wasn't diagnosed until 2011. . The reason it took so long for a diagnoses was because of my weight problem. I was always getting the "you need to lose weight" talk. My tale is long and my journey painful but as I begin blogging I hope to put my story across to you because it's time it was heard. All this in the hope that it brings awareness to the ignorant and hope to those who identify with me.