Wedding Bells 2

I’m going to another wedding on Friday. It seems like it’s our generations turn at the moment. If my friends aren’t getting married, they’re getting engaged or if not either of those, they’re having babies.

I’m really looking forward to it but as usual it throws up plenty of questions for those of us with fibro. Naturally it’s going to be a long day, I’m going to the whole day and that brings its’ own considerations. I’ll be sitting for as much of the day as I can but while that takes some of the strain off, it always leads to more stiffness, so I’m damned if I do and damned if I don’t.

A lot of times the week of the wedding can be just as tiring as the day itself. There is family to meet, ‘last pints’ to be had with the groom, more ‘last pints’ to be had and when in doubt another pint or two. Well to be honest that’s how things used to be. Now, I’m using this week like a storage operation. I don’t have much spare energy at the moment but any I do have I’m squirrelling away.

This is a nightmare because my mate is only back in Ireland for the week, getting married and then going back down under. I haven’t seen him or his fiancée in a year and would love to meet up with them for a pint or a meal. But even if they had any free time, I’d be using up valuable energy that I’ll need on Friday, so it’s a non-starter. They have enough to be worrying about anyway, getting the last few things organised for their big day.

This means I’m putting a lot of pressure on Friday being a great day. My week is revolving around being in good form and feeling good on that day. It would mean so much to me to feel awake and not too sore. Luckily though, I’m learning to cut myself a little slack so if I’m not feeling too good, I won’t beat myself up over it and I’ll just get on with enjoying the day as best as I can.

Seeing my friends getting married will be fantastic and I’m delighted that, as it stands now, I’ll be there to see it and celebrate with them. In the grand scheme of things it won’t matter how sore I am or how tired I feel. I’m just looking forward to raising a nice glass of red (or maybe just lemonade) to toast their marriage.

No matter whether I drink some wine or stay on the soft drinks, I will still get the most horrible hangover for a few days afterwards. Hangover is the only way to describe it, despite the fact that alcohol probably won’t even be involved. All the symptoms I have will worsen, my nerves will be incredibly sensitive, my migraines will get worse and my stomach will be in knots. All this will be brought on just by the fact of being out and about and concentrating on conversations and what is happening around me.

Not only am I preparing for the wedding by clearing my schedule in the build-up, believe it or not, I’m also planning for the days after as well. I have learned over the past few months that this is the best way to enjoy the events and celebrations I want to be at.

It doesn’t work perfectly and sometimes I still have to cancel on short notice. I’m hoping that won’t happen and having learnt about my fibro I’m giving myself the best chance to be there on Friday. In many ways I hope that Saturday brings all those worsening symptoms as it will mean that I made the wedding and I enjoyed myself.

I’ll just have to squirrel those good moments away as energy boosters for when I’m feeling bad at the weekend.

Congratulations K+S and I wish you a long and happy marriage.

Form Fatigue

‘If you could just sign at the bottom there and just initial beside the x, that would be great thank you.’ Such a simple phrase, it shouldn’t be a major issue but I’ve had enough. This is far as I’m going, game over. I have absolutely had my fill of it.

There are many different symptoms that fibro can bring into your life. Each and every one of us, despite coming under the same heading, experiences fibro in different ways. Some people could have similar experiences but the degree to which each individual symptom impacts can be different.

At the very beginning I went to see my GP and he recognised that I needed some time off work to get on top of things and he gave me a social welfare cert so I could get some sick pay. I signed and dated that form and I sent it off. Eight full months later, I’m still signing and dating these forms in order to receive my sick pay.

As it became apparent that I would be off work for a little longer than the week or two I originally thought, I was prompted in the direction of some supports and benefits I would be entitled to. This was vital, as it has allowed me to continue living in my own home while I get to grips with fibro.

I filled in form after form at appointment after appointment. One day I arrived into an appointment with all the information that had been listed as requirements online. Finally I’d be sorted, or so I thought, it turned out I needed another form signed by my mortgage company and myself. ‘Our website just hasn’t been updated yet.’

I bit my tongue, breathed in and out slowly and carried on about my business.

After consulting with my GP, we decided that I should see a specialist to deal with some of my symptoms. First up was the rheumatologist who diagnosed my fibromyalgia. After that, we have worked through my other symptoms. I have seen neurologists, gastroenterologists and sleep disorder specialists. I am on-deck (quick baseball reference) to see another neurologist and also a urologist.

This has been my route for the last while and has taken me to see many fantastic people who have helped me out. However, whenever they did tests or needed me to visit a hospital as an out-patient, I was required to fill in form after form and have information about my health insurance etc. with me.

It might not sound like much but everywhere I turned there has been paperwork. Everybody works independently of each other, so my GP and I have filled in and signed countless forms at this stage. All of these have been needed because I have been unable to work and I wanted to ensure that I was getting the right support both medically and financially.

I chatted to a citizen’s information officer today to make sure I was on top of my benefits and entitlements. It turns out I’m receiving everything I should be and not getting anything I shouldn’t. While I was there they tried to talk to me about what would happen if I returned to work, even part-time. To be honest I got lost in the technical speak and the volume of paperwork needed to keep some of my benefits and apply for other entitlements once back working. I couldn’t even concentrate on what was being said. I excused myself and left. 

And that is why I’m finished. I’ve had my fill of forms, getting reports from each doctor I have seen and cross-checking them with what each individual application form requires. I can’t remember where I heard the term ‘form fatigue’ before but I sure as hell know what it feels like. If I had the energy and the concentration to fill in all these forms to return to work, I wouldn’t be out of work and on benefits in the first place!

I have always said I will get on top of my fibro and return to work at some stage and that remains the same, I just need time. As for reports and forms, if I see one more form that needs filling and signing in the next few weeks, well, good luck to whoever hands it to me.

Big Brother II

Just three short weeks since my first sleep study, I was back in the hospital this week to go through it all again. With the week I lost last week feeling so bad, it has actually felt even quicker than that. There hasn’t been a lot of time to think about the diagnoses I got but on Tuesday afternoon I had all the time in the world.

I was admitted to the hospital early on Tuesday afternoon just like the last time. However, because I didn’t have as many sensors and receptors to be attached this time, I had a lot more free time to myself. I didn’t want to say that I have sleep apnoea the last time and I didn’t know why. Truth is I was scared, but now I can say it, my name is Fibrofella and I have sleep apnoea.

It’s been a very quick turnaround from initial consultation, through diagnosis and on to treatment. There hasn’t been much time to analyse what has happened at each stage and consider the long-term impacts of the situation. It was only when things slowed down on Tuesday afternoon that I understood what I have been feeling. With little to distract me I began to focus on the fear that I was experiencing.

I’m sure plenty of people, including myself, complain when having to wait a long time for appointments. Considering how quickly I’ve been seen and dealt with on this occasion, you would imagine I’d be happy. Not a bit of it. I convinced myself that it must be really serious if I’m being moved along so quickly.

The mind really is a powerful thing but in fairness to myself I wasn’t completely wrong. When doctors begin to talk about increased risk of high blood pressure, irregular heartbeats, heart disease and strokes, your mind begins to focus. As a short example, I was told that the degree of my apnoea was the equivalent of doing three triathlons every night due to the extra strain I’m putting my body under. Apnoea comes from the Greek for ‘without breath’ and that was causing the extra strain on my body. Not only do I have sleep apnoea but it is on the higher end of the scale.

All of this information scared the life out of me to be honest. I haven’t said that to many people but it’s time to face up to it. I’ve said before that having the opportunity to learn, get help and then improve your situation is all we can ask for. So that’s what I’m going to do and improve my life. I’m scared for the future of this sleep disorder and the risk of diabetes, stroke and heart disease but I’m still going to find the silver lining.

In fact the silver lining is staring me in the face. I’m 28 years of age and have an opportunity to treat my sleep apnoea. If it went undetected my first warning sign of could have been my last, that’s what the doctors said anyway. That makes sense really when I consider how often I stop breathing throughout the night and what would have happened if it continued, untreated, for a long time.

So there we are, on top of my other fibro symptoms, the IBD etc. etc.  I have sleep apnoea. It’s still scaring me a little but it is only a matter of getting used to the situation. Having been warned of the risks of it going untreated, I won’t have to be convinced to use my new breathing apparatus. It’s uncomfortable, ugly looking and I’ve only been using it for a couple of nights but if the alternative is any of the illnesses mentioned above, my new CPAP breathing machine will quickly become just another part of my treatment.

I’ve lost count of the changes I’ve made in my life already, what difference will one more make? In this case a pretty big one in fact, it will reduce my risk factors for some serious illnesses and improve my quality of life. I think I’ll take that in exchange for a small bit of fear and discomfort.  

Fried

I’ve been tired, really tired, fatigued, exhausted, shattered, weary, jaded, overworked and I’ve even been pooped on occasions. This week has brought a new feeling into the equation. This week I’ve been fried.

Fried. Completely and utterly fried.

To me it sums up a lot in one simple word. I don’t know much about computers but when you hear about the components being fried, I think all of us can picture it. Getting the award for the most obvious simile of the year, ‘my brain this week has been just like those components, fried.’

Each and every day for me has a to-do list prepared for it. This does not include lunch meeting at 1pm and then try to take over the world. I start with much simpler plans. Set alarm for then, leave home at this time to get milk, ring doctor to make an appointment. That wasn’t just an example; that was my to-do list last Tuesday week. Just three simple tasks to tick off and I had a successful day.

I went to a chronic pain seminar last Sunday. It was a very relaxed and easy-going day and our experienced facilitator knew when we were getting too uncomfortable and wrapped the event up. I had promised to send an email to some fellow fibro fighters after this course if I heard anything that they too would appreciate. That seminar was last Sunday, today is Friday, only five minutes ago did I send those emails.

Throughout this week I have had two doctor’s appointments and two other meetings to get to. Spread over the whole week that really isn’t much. Each evening I assembled my three notebooks that I use throughout the day. (Two for around the house and one for when I’m outside) I then spend five minutes planning the next day and noting any new appointments onto the master chart for each month.

So each day this week I have had, at most, one appointment to make and I’ve been able to plan for the rest of my day. Each day I have marked on my to-do list, send emails regarding the pain seminar and post a new piece on WordPress. Why have I had to write it down each day? Well, because this week my head has been fried. I haven’t been able to concentrate beyond what was vital each day and so they have been put on the long finger.

The concentration and focus it took to get to my appointments meant that when I got home I had used up every drop of energy I had for that day. I spoke last week about how drained I was by the sun but this week has been even worse. At least last week I could explain how drained I was by the sun’s presence, I’ve no explanation for how I have felt this week.

My experience of fibro is constantly evolving. What works one week doesn’t necessarily work the next and you NEVER know what tomorrow will bring. I apologised for the delay in sending those emails but I wish I could explain why this week in particular I can’t focus on anything and I have the attention span of a gnat.

Explaining to people what fibro is and what it involves is always difficult. We are always searching for ways to explain to our family, our friends, our medical teams and everyone else what it is like. Unfortunately it still feels like some people will never understand unless they experience it themselves. However, at least from now on I’ll have a new adjective to add into the mix when I attempt to explain what is going on.