My Shins Are In Great Shape

So the last two weeks have flown by in a blink of an eye. There has been so much going on that I’ve never been so grateful for my little pocket notebook. As I’ve said before if it isn’t in the book it doesn’t happen so I’ve been indebted to it for getting me to the right place for each different appointment. Actually that’s not fair because with my car up on bricks like I told you last time, I’ve needed the family to drive me about the place and they rather than an inanimate object should be getting the kudos!

So why have the last two weeks been so busy? Well in the space of 9 days in the middle, I had 3 hospital visits, I think it was 8 scans/x-rays, one full anaesthetic and two very invasive procedures. So I’m sure you’ll forgive me for not giving you a running commentary in the meantime. As anyone with fibro will attest there is often a bout of examinations in a short time like this and then it can settle down for a while. It’s very similar in fact to waxing and waning that can occur with our fibro symptoms.

Two weeks ago today the odyssey began. The mammy dropped to the hospital for my first tests. This first appointment was for a full urodynamic study to take place. I’ll save you the detailed descriptions but it’s safe to say that had it not been in a hospitable setting I would have had to buy the doctor her breakfast the next morning! We no longer have any secrets about my bathroom habits, movements or anything like that but I did find it unfair that when speaking into her Dictaphone she said ‘I’ve examined the patient and found nothing remarkable’. That was a low blow considering I was sat in stirrups at the time!

Onwards we went anyway and two days later I found myself in the radiology department of the local hospital. I’ve had serious pain and discomfort in my hips and lower back recently and it was time to find out what was going on. I’ve had plenty of MRI’s done before so I settled myself in for a good snooze while the scan was taking place. Two days later, the results are in and I get a bit of a surprise. My hips are structurally sound but I’ve a slight tear in one disc and a bulge in another one in my lower back, just another diagnosis for the list really.

This brings us up to last Thursday and the hat trick. Again the Mammy dropped me into hospital for what was supposed to be a routine day procedure but as everyone knows I don’t do things by halves so I made myself comfortable there until Saturday. This procedure would complete my hat trick of visits in the last two weeks but it would also complete another hat trick for me. I had a colonoscopy and endoscopy done in February this year so as your biology classes will have taught you there is only one place left they could insert a camera and examine my insides!

It should only have been a day procedure as the anaesthetic only put me out for about an hour but because of my sleep apnoea they wanted to keep me in for one night afterwards. The Doctor (I found it ironic his first name is Richard, think about it!) though found something during the procedure so decided he wanted me kept in until Saturday for observation. In fairness I’m glad he did because with the pain and discomfort that followed the procedure I didn’t want to be too far away from the people with the drugs.

So here I am three days later and I’m still in pain and discomfort but slowly but surely it’s improving. I do hope though that he doesn’t have to repeat the procedure because now I know what’s involved I’m not too keen but then again if it’s necessary I’ll just have to get on with it. All the extra time spent in hospital got me to thinking of the tests and examinations I’ve gone through in the last year and I’m not sure there are too many places left to check.

As I sit here today I’m trying to think of an area of my body, inside or out, that hasn’t been examined in the last year. I know my memory can sometimes play tricks on me but honestly all I can think of is my shins. Fibro is such a wide-ranging, systemic illness that I’ve had symptoms and indeed had diagnoses made and/or tablets administered for every other part of my body except the shins. Many years ago I was told if I was horse they would have put me down; thanks be to feck I’m human. If you’re still not sure though I’ve definitely got the scans to prove it!

The Perfect Metaphor

Often when I sit down to write these posts, I search for an issue to do with my fibro that is affecting me at the time, something that has happened in the past few days that will inspire a post or even a rare piece of wisdom (to do with fibro) that I would like to share with people. This week however I have had no such worries. Sometimes a metaphor will just jump out at you and, no matter how cliched it may sound, you have to run with it. Despite the fact I’m sure many people have written about this before, I just can’t resist the opportunity to tell you what happened to me last Friday.

I’ve spoken before about the unpredictability of fibro and that a flare or painful period can come on in next to no time. Flares can also strike no matter what you have done to prepare your body for anything from a wedding to a meal out with friends. All of us with fibro (and probably our friends too!) know that right up until the time we are due to be somewhere, there is always the possibility of us having to cancel.

So it was with great trepidation that I looked forward to last weekend. The plan was to drive Northern Ireland and meet up with all my family where my Dad works, spend a night with them and then travel to the west of Ireland for a night away with my fellow fibro and arthritis fighters. It was going to be a hectic couple of days so I took all precautions I could in the build up so as to be in the best form possible. Plenty of sleep and relaxation was done to get me through the weekend, knowing that even still I might have to suffer in exchange this week. For once my body held up pretty well.

I had a really enjoyable night with my family, we had a swim in the hotel pool and a bite to eat in the restaurant afterwards. It was a brilliant evening, capped off by Katie Taylors fantastic Olympic Gold medal winning performance in the boxing ring. The next morning I packed up for the trip to Westport, I was a little tired and sore but that was to be expected. I waved goodbye to my family and picked out the first couple of CD’s I’d listen to on the drive.

I had gone barely five miles when disaster struck. My temperature gauge went off the scale, there was a massive hissing noise and a shrill whistling sound coming from the engine. There on the main road out of Armagh, my car was having a flare up of her on. Totally out of the blue, and despite the oil/water check and the full tank of petrol I’d given her the day before, she was done, could go no further and was useless to me.

Now obviously you’ve seen where I’m headed with this post, in fairness I haven’t disguised it much. The perfect metaphor had been found, my car was having an ill-timed, disruptive and totally frustrating flare up just at the point that I needed her most.

The next few hours where full of phone calls, texts and arrangements being made to help my poor car. First on the agenda was a call to cancel my trip to Westport. I’ve found out since what a cracking night it was but I swear I’m not jealous! This sounds remarkably similar to the many calls I’ve made at the last-minute to cancel or change plans I’ve had with friends. The next call was to a mechanic to see what could be done to make the car work again. This too sounds remarkably like the calls I’ve made to GP’s, consultants, specialists, therapists, healers etc hoping to stumble across the right combination of treatments for my condition.

Next of all came the waiting. Sitting by the phone all the next day, I waited and waited hoping for some news about my car. I don’t know about you but I’ve lost a lot of days staring at my phone, waiting and waiting for the results of this test or that test. I don’t know much about cars so I was kind of hoping there was something, just a little something, wrong with my car to show I had been right to stop and look for assistance. This too is a road (see what I did there!) I’ve travelled many times while waiting on a blood test, an x-ray result or an MRI result; ‘please let it show up something so that the doctor won’t think I’m mad and that this damned fibro is all in my head’.

I found out yesterday that my car can indeed be fixed. It will come at a cost but I think she is worth it. She owes me nothing and I’ve been lost without her for the past few days. I never realised how much I rely on the car. Again the cost issue sounds very familiar to me and I’m sure for lots of you too. The saying says ‘Your Health is your Wealth’ but if you run out of wealth to pay for treatments and tests well then your health is damn sure going to suffer too.

I’ll find a way to pay though because as I say I’ve been lost without her. This is similar to my attitude to healthcare. My folks have been AMAZING in supporting me and enabling me to carry on through test after test. On the rare occasions that I have to find the money myself, well I consider it completely necessary so my credit card takes a hit. If it helps me recover and feel better about dealing with my fibro well then I’ll find a way to make it work.

I was often told after each surgery I had for football injuries that if I were a horse they would have put me down years ago. Well I’m still here fighting and I won’t be giving in just yet. With that being the case, I’m not going to let them put my car down either. I’ll find a way to pay for her repairs and I’ll find a way to pay for my repairs too.

The only problem is that she could be fixed by the weekend but my repairs will take a lot longer and I don’t think I’ll ever run as well as I used to.

The Curse of Fibro Fog

My Granddad has been doing crosswords as long as I can remember. When he completed the ones in the newspapers he would send them in and win a few bits and pieces here and there. I remember when I still lived at home, he would ring every Monday night to see if my Dad or I could help him out with the few clues he was having trouble with because he would want to post the completed crosswords no later than Tuesday morning.

I don’t live at home and my Granddad is in a nursing home so there are no more phone calls on a Monday night but he still continues to do the odd crossword and read the papers with his magnifying glass at hand to help him out with the smaller print. There is absolutely nothing wrong with his mind and he’s as sharp as a tack at times. At other times if he’s tired he’s content to close his eyes and be happy listening to the voices around him. What I can’t understand is the levels of concentration and focus it must take for him to either read the paper, do a crossword or just carry a conversation. He’s a great age and living strong for someone of his age, while his body might, understandably, be slowing down, his mind has barely started doing the same.

I’ve spent the last three weeks or so searching for the right moment to vent a little by posting on this blog. It usually takes me about an hour to write a post once I’ve sat down in front of my computer. I’ve lost count of the number of times I’ve sat down at my computer, written a sentence, stared at the blank screen for ten minutes and turned the computer off in the last few weeks. In fact I began this post on Saturday last and I still can’t bring myself to read over it again, so I apologise if it doesn’t make a precise point.

These past few weeks have been incredibly difficult for me to focus on anything. I haven’t been able to read a newspaper or a book, read the news on the internet like I normally do or even watch a new programme I’ve recorded off the television. I’ve caught myself staring at the television wondering how long I’ve been watching that channel. On the worst occasion I was watching a football double-header and halfway through the second game I had no idea who had won the first match. I had watched it but my concentration was so bad I hadn’t taken anything in.

This doesn’t happen all the time and I can concentrate when I have to. For example if I’m driving anywhere or making an important phone call I can concentrate for that amount of time. However the more I focus on these things the less energy I have for the rest of the day. I have to plan each day very carefully because if I use up all that energy early in the day, I will feel hollow for the rest of the day. I don’t know if that is the best word to describe the feeling of heavy fibro fog. Another way of describing it is that I would feel like a zombie. In that sense I would be floating through each day and not interacting properly with the world around me.

We all now what fibro fog feels like but I’ve found it really hard to explain. Up until now it has mainly affected me through memory lapses and forgetfulness. Recently however, the fog has settled in for the long haul and hasn’t lifted in a long time. It’s a bit like the summer we’re having in Ireland this year; the sun is trying its best to burn through but the fog and mist are not for shifting.

It has been going on for a long time now and it’s not a sensation I enjoy at all. Momentary forgetfulness or memory lapse is easily explained away but it’s harder to explain a debilitating lack of focus or an inability to concentrate on more than one thing each day. What has this got to do with my Granddad you might ask?

Well basically I’m proud that he still finds the energy to focus and concentrate on a newspaper, do the occasional crossword and talk to all of us when we visit him and my Gran in the nursing home. He is three times my age and can still find that energy despite the fact that it would be easier for him to become insular and try to store the little bit of energy he has each day.

I haven’t been able to focus on this post for more than a few minutes at a time this week and I feel drained now that it’s finished. Fibro fog, for me, is more than just a momentary forgetfulness, it’s a debilitating experience that eats up every last bit of my energy. For those of you who have suffered with this before, I’m sorry that I’m only now understanding exactly what it feels like. Fibro fog is a curse.