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.