Nicci's Story, M.E. Sufferer - "It's Terrible... But You Have To Laugh..."

by Nicci
(Swindon, UK)

Yes really... you do have to laugh - stop laughing and this condition becomes 10 times worse. Even if nothing is funny - tap into your dark sense of humour and find something to laugh at there... keep laughing!

I was only diagnosed with M.E last December actually - but I have been a 'sufferer' for 2 1/2 years.

It all started with a virus. I didn't really take the time to rest and just thought it was your average infection. Little did I know that my workplace was on the brink of being closed down due to a break out of Mumps...

7 weeks later, the virus finally seemed to lift but left me exhausted, which was no surprise, so I didn't worry. I continued to cycle my usual 5 - 7 miles a day and carried on with my life, taking rests / power naps at lunchtimes to deal with the post viral fatigue I had.

3 months later I was still needing to sleep (on the loo at lunchtimes - how glamourous!) and started to worry.

So off I popped to the Doctor to get tested for Aneamia and Diabetes, just in case. The tests came back negative. Here is where I got sidelined...

I started getting massive attacks of Cystitis all through that Summer. I was crippled by it: One attack after another for weeks on end. By October of that year I was getting Cystitis 3 times a week!

This was the lowest of the low. I was yet again completely exhausted. I had to leave work in the middle of the day. I had to leave friends sat in restaurants. I had to give up Cycling...

I paid £120 to see a Urologist on Private Health because the NHS had a waiting list of 14 weeks...14 weeks!!! I underwent investigative scans and a cystoscopy with hydradistention and was diagnosed with Interstitial Cystitis. I was told that Cystitis occurs for no particular reason: I wasn't told it was an Auto-Immune disease - I discovered this for myself when I decided to research it after the continual flares.

I was devastated to learn it was chronic but nonetheless I treated myself and managed to get the symptoms in remission and now I no longer have flares.

However I was still exhausted and continually so, gradually getting worse. I had missed 1 years' worth of periods in 2 years. Nothing was right.

I initially went to my Doctor about the periods as a test. I have Polycystic Ovarian Syndrome so irregularity is normal but when it becomes virtually absent it is wise to start scanning on a regular basis to ensure everything is ok. I told him how many I had missed altogether and his response was 'If you are not in pain then don't worry about it'.


I changed my Doctor immediately. I moved to a fabulous surgery which has many Doctors who each have a speciality, one of whom is the Endocrine System and one of whom is Fatigue.

I had numerous bloodtests to determine what I did have and what I didn't have (because by now I was completely confused) and PCOS was finally confirmed.

I have had PCOS since I was 21. I am 25 now and was formally diagnosed at 24. Bearing in mind I actually had an invasive operation to deal with cysts on my Ovaries at 21, you would have thought they might have sat me down and gone through this with me? Ha ha... don't think so - and that was done through PRIVATE health!

Then of course the I.C was still there, a month after this diagnosis. I was formally diagnosed with M.E. 3 months later. (After 6 months of gradual deterioration I had a major relapse and couldn't work for 3 months.)

I am now currently working 18 hours per week with staggered days off and do my best to keep a normal life going. My social life is virtually non-existent and I am striving for more balance in that area.

My Family have been mixed about this and not always consistent I have to say. My brother doesn't believe it exists. My Parents do, but are losing patience and get frustrated these days. And I have to say, the energy I spend fighting my corner against the rumours that there is something psychologically wrong with me is something that desperately needs to change. I wish I had the energy to go kick some ass >: )

At the moment I am doing ok. I have had 3 infections in the last 2 months because people insist on coming into work sick. I could kill these people... really! Coughing their germs all over me - thanks for that.

I have even pulled together a presentation and discussion for my family to help them understand this better. Friends have started to visit me, which is lovely.

That's my story. I've laughed most of the way through it. If anyone starts whinging at me or telling me it doesn't exist or that I am depressed I have wonderful, humourous and sarcastic responses for them. Researching and learning the mechanisms of all 3 conditions has given me a super hero toolbelt to deal with these villains. Educate and inform yourselves to the max. I would like to say you never come across these people, but you do, and you know it's understandable. Just be ready to teach them what it's all about. Don't just stay schtum!

And I keep saying it, but most of all, laugh as much as you can. Find the fun in everything possible. :-)

Comments for
Nicci's Story, M.E. Sufferer - "It's Terrible... But You Have To Laugh..."

Click here to add your own comments

A sadly familiar story for many M.E. sufferers
by: Sleepydust

Thanks so much for sharing Nicci. The struggle to get the recognition and understanding seems to be a very familiar story for many M.E. sufferers out there.

I definitely agree with your mantra - Laughter can be one of the best medicines after all! It may seem difficult but trying to find that silver lining in every cloud, really is important. Thanks for sharing your experiences with us all, Nicci.


Click here to add your own comments

Join in and write your own page! It's easy to do. How?
Simply click here to return to Share Your Story And Experiences Of Living With ME/ Chronic Fatigue Syndrome Or Fibromyalgia


Back to top