But then they will tell you just as quickly what they can’t do. They can’t offer a cure. They can’t make the fatigue go away. They can’t cure your brain fog and they won’t be able to prevent a flare-up in your condition.

They can only tell you that the best fibromyalgia treatment is self-management. You must learn to adapt to your condition and you must learn to adapt to a new life very different from the one you were used to before you were hit by fibromyalgia. In other words, they’ve given you a diagnosis. They’ve told you that your condition day to day depends on how well you manage your disease. If you wake up in pain, stiff and more fatigued than you went to bed- maybe you did too much yesterday. Maybe you’ve been neglecting your physical therapy. Maybe you haven’t been doing your stretches, or your 20-30 minutes of mild aerobic exercise. Maybe you haven’t been taking naps or taking time out when you need it. In other words YOU haven’t been managing things properly.

Is it any wonder that patients with fibromyalgia have a lot to grieve over when adapting to to our new lives? When every time we feel worse, we may have ourselves to blame? The only person we can go running to for relief of our current symptoms is our-self?

But I learnt a few things that will help later planning. (Hindsight is wonderful- so is the Internet when you want to get some more suggestions.) Here are some tips I would suggest.

1. Air travel is hell. Seats are uncomfortable and so close together that to get out and stretch a little is major imposition on the person beside you. Lesson: Only book aisle seats.
2. Airports are definitely one of the levels of hell. You do so much walking that you have no choice but rest when you arrive at your destination. But rest is good…
3. Short breaks should be short, and long breaks long. Short applies especially for a city break. The intermediate, 4 day stay away, is more difficult to manage. You feel you need to pack more in because you’ve got those extra days. But by day 3 your body is screaming for a day off. And it’s difficult to fit in pre-emptive rest before the travel home. As for long breaks, you should leave long enough between departure and return travel to rest properly and still have time to enjoy your trip.
4. If you’re travelling for a specific event which may be taxing, arrive a day or so before it, and plan to leave a day or so afterwards. Rest before, rest during a long day’s activity (eg family event, work commitment) and rest before you travel home. You will still need recuperative rest afterwards, but by following these travel tips you enhance both your enjoyment of the event, and your memories of it afterwards.
5. Don’t try to do everything. “10 sights not to miss on a visit to…” screams the guide book. Or for a social event, perhaps there is a list of organised activities or get togethers. Make your own list of what you really want to do, then what you’d hate to miss, and see what you can fit into your own rest-rich and self-treatment schedule. Don’t be over ambitious. Don’t sacrifice your stretching routine or relaxation program just to visit one extra museum or you may reduce your enjoyment of the whole trip.
6. Share your plans with others around you. Especially anyone who may not be aware of your condition. Let them know your fatigue and pain ‘warning signs’ so that they will urge you to rest, even if you’re unable to make the decision for yourself and are trying to keep going.
7. Don’t be shy of asking for mobility aids, even if you don’t use them regularly. They are usually free. In airports especially, you may have to walk for long distances just to move between check-in, security and departure gate. Save your energy for when you get to your destination proper. Large museums often have motorised buggies or wheelchairs- make use of them if you think they will make your experience more enjoyable.
8. Do not stand around waiting for anything if you can avoid it. Sit down in the hotel lobby while your travelling companions check you in. Pre-book tickets to attractions to avoid queuing. Avoid using public transport at peak times or get a taxi so you can sit between destinations. Museums are usually full of convenient seating in front of significant attractions. Make use of them.
9. Book the best hotel you can afford, right in the centre of things, with all the comforts of home. ‘A short walk to all the attractions’ may add a significant distance to your daily burden of movement. And a cheap hostel may be loud and rowdy with a cheap mattress. You have probably already had to cut down on travel, so splash out when you do go. You might want a bath to soak in at the end of the day, or even a wellness suite with masseurs on site!
10. Be adaptable, and willing to change your plans if your body is not keeping up.

But I had an excuse, I had a month from hell.

It coincided with one of the phases of grieving over my fibromyalgia I guess. Not sure which phase, but it left me extremely pissed off, despairing in the realisation that this thing doesn’t go away. It can get better, by degrees, you can see improvements with various forms of treatment or self management. But it doesn’t go away. Overdo it and it will come back.

And the improvements people talked about in ‘testimonials’ on line: “I used to not be able to get out of bed- now I can leave the house two or three times a week and I can get up stairs to my bedroom without stopping to take a rest.” Or: “After two years of following X program, I can now walk for twenty minutes three times a week“. Even: “I can now work at my computer for two hours a day, as long as I break it into four half hour sessions.” This was not encouraging news to someone who four or five years ago was walking 15 to 20km hill walks and was now the one who was having to take a break on the way upstairs. And who at the peak of writing was putting down 10 000 words a week of new writing (translates into about 40 hours plus a week) and who now can’t write a three line e-mail in less than 20 minutes, and has to edit it later for idiotic mistakes.

My depression also reared its angry head as it usually does in Autumn and added to the above, led to a pretty toxic month. I didn’t write on here, because I knew for a fact that it was futile. That everything was futile. Why would anyone, anywhere, ever, be the slightest bit interested in what I had to say. And even if I thought it might be worth adding a few toxic comments to the blogosphere, I was going through some kind of a flare and the energy needed to hit the key board in some kind of logical order was energy I didn’t have- mentally or physically.

{Gap of about 3 weeks}

Yes I was so pissed off I didn’t even get to finish the post.

Now three weeks later, things are up and down. I had a weekend away during that time which was great, I managed to take pre-emptive rests, but I was still exhausted by day three (long weekend). But I learnt some things for future trips

My mood is up and down. On down days I don’t even want to leave the house to take my walk. On good days, I go for my walk, do a few household tasks, and then when i get exhausted, my mood dives again as I remember the ways fibromyalgia is limiting me. And limiting other members of the family. I feel guilty, depressed, useless, and the future stretches out un-invitingly with more, much more of the same. As I was only diagnosed at the start of the summer, I don’t really know if this is a flare or just the way my fibromyalgia is. Certainly I think I feel more limited, and sore, than I did in Spring of this year for example. but I wasn’t monitoring it, and my memory is so poor that I can’t really be sure of that.

I’ll publish this post now, could write more if I could stay at the computer longer, but if I don’t publish now it could be another three weeks before I do!

I was recently put on a new medication which makes me want to eat. A few years ago I came off an antidepressant that had made me put on a load of weight, and I lost 10 kg after coming off it. But I worked hard at it. So now my weighing scales is my constant buddy. I can’t afford to let the weigh creep up again, and in fact I had planned to lose a few more kilos before Christmas. But on holidays just after starting the new meds, over three weeks, I put on nearly 3kg. So now my goal is merely to get rid of that weight again, and keep steady for a few months.

As extra exercise isn’t an option, it’s all about calorie control. And with sugar cravings, that ain’t easy!

So I decided to distract myself. I threw myself into online writing. Articles, blogs, back-links, whatever I could find. Watching my AdSense revenue creep up (cent by cent up to about €6 a month) has been fun, and a bit of a motivator, but really it’s about diverting myself from eating, and thinking of food. And of course the temptation that if I keep working on it, my income might increase a bit like my other buddies on those sites.

But writing isn’t the only thing you can do to distract yourself from eating. I even wrote an article about it on Infobarrel. I sincerely believe that if you distract yourself enough, it is easier to lose weight without too much willpower. Count calories, limit what you eat, and distract yourself from eating with a hobby. It’s the program I’m trying at the moment, so I’l give it a few months and see how I get on!

Try to plan your day, each day, taking your energy and ‘brain’ requirements into account. There is no point is saying you’ll answer that important e-mail at 12 o’clock, if you’re planning on walking the dog, cleaning the house and writing a report for work at 9, 10, and 11 am respectively. I don’t know about you, but I’d be wiped out after that morning, and not able to put string sentence together, let alone a whole e-mail by 12.

Divide out your energy in a miserly way. Don’t be too quick to accept other people’s work, just to make a good impression. If you can offload some of your own work do so. It may sound like anti-social behavior, but energy is the most important resource fibromyalgia sufferers possess (or not). It can mean the difference between a pain-free or pain-ridden day. Between a (relatively) good night’s sleep and a poor one. Between being able to do the day’s essential tasks and not being able to do them. Do you really want to photocopy and collate your colleague’s presentation, and then not be able to take the kids to the park, because your arms are to tired to even consider driving?

Devote some of your energy to gentle exercise. It may be hard, but it will pay back more energy in the long run. It will also help with sleep, pain and depression.

If you really need to do something that you know is going to cause pain and result in exhaustion, then make sure it’s something really important. And by that I mean important to you. And plan to rest the next day to make up for it. Consider taking pain relief before you need it. Don’t keep going through the pain asking yourself- is it bad enough yet, is it bad enough?

Delegate- it sounds obvious, but don’t ever, EVER consider emptying the dishwasher or vacuuming the house from top to bottom, if you have teenagers in the next room watching TV or gaming on their computers. Remind them you gave birth to them, and now it’s payback time. If they get stroppy, start telling them about their own unique birth story in graphic detail and they’ll give in fairly quickly. In fact teenagers in the house watching television is a good cue to start looking for jobs for them- it might save you energy in a few days time!

Since I started having major memory problems a few years ago and sometimes even lose my basic intelligence and ability to reason, lists have become far more important. As has writing things down.

I make a list every morning, and it includes all the things I need to get done in the day. So What? Loads of people write lists… Buy kids’ schoolbooks, check uniforms… especially at this time of year there are as many lists as there are parents. But I include everything on my list. And I mean everything. Do laundry might sound like a reasonable item on a list. But when you do a load of laundry every day, you’d imaging it might become automatic. And it used to be. But before I started writing lists, I could look at the laundry basket and tell myself to do it. Go into the bathroom to get a pile of laundry for the machine. Stop because there’s towels all over the floor. Pick up the towels. Leave bathroom. And this could happen two or three days in a row. The dirty clothes will have piled its way out of the basket and started invading the rest of the bathroom.

Other things on my list might include ‘eat lunch’. Especially if I’m going to be on my own for most of the day. I have been known to make lunch at about 1, get distracted, and then find it still sitting there at 5. And I’d be wondering why I felt so awful, and tired, and irritable.

But the biggest value in the list is that is saves time. If you check the list every time you leave a room, leave someone’s house, leave the shops – then you may remember a task that needs to be done, and will save you another trip later. Like my prescription. I’ll drop it off, do some shopping, and come back when it’s ready. But sometimes I wouldn’t realise that I’d forgotten to collect it until I ran out of tablets. So another trip to the shopping centre, and an urgent one this time.

So how does a list actually improve your memory, when really it takes away all the incentive to remember by providing a constant crutch? I’m sure there are plenty of scientific reasons that the scientists and neurologists will come up with, but I reckon that if I write something down, and know I’ll be looking at the list later, it goes into the checked file in my brain. I don’t have to worry about it as much. It will get done – it’s on the list. And that clears up loads of space in the rest of my brain. Not just for remembering, but for all sorts of other cognitive tasks. Like adding, making decisions, putting a meal together (yeah, seriously!) All those things have begun being alot easier since I started writing a list every morning, and transferring any items not done to the next day’s list. Fibrofog isn’t gone, in fact in the evenings, when I’m trying to put a meal together, I can still forget what to put into the bolognese I’ve been making for years. But little bits of my memory have been rescued, and confusion isn’t as much of a problem.

Continue reading here for some more tips about coping with poor memory, lists, and some more general fibromyalgia advice.

At first there was an almost elation-type relief. Finally I knew what was wrong with me. I wasn’t a hypochondriac. And I wasn’t imagining my pain or fatigue to be any worse or more inconvenient that anyone else’s.

Because I sure had pain. Back pain, leg pain, foot pain, arm and hand pain, shoulder pain. I suffered from migraines and was put on a beta blocker. I have a long history of depression and am currently on two anti-depressants, one to help with sleep. (Antidepressants also help with pain.) I am taking regular painkillers and a load of different supplements for all my different symptoms.

But worse than pain which can be described and pinpointed, which in some cases can be treated with anaelgesics – worse than pain was the so-called fibro-fog. The cloud that enters your brain and messes it up. Which makes you think you’re losing your mind. Which suggests to you that you have early dementia or alzheimers when you forget your own children’s names in the middle of a sentence.

And the fatigue- which uses up your energy before you even get up in the morning. Which makes you plan a week ahead just so you’ll have enough energy to go out to dinner at the weekend. Which stops you half way through hanging up a load of laundry, certain that you cannot finish the job.

But now that I have a diagnosis of fibromyalgia, all this is real. I wasn’t imagining it. It wasn’t all in my head (actually it’s in the brain and central nervous system, but that’s another story). I knew I wasn’t cracking up. So relief was the first emotion.

But soon other emotions crept in. A sense of loss, of mourning, for what I had before – The 15km walks I had been on, and that I didn’t see myself doing again. The way I could just keep swimming up and down a pool for an hour, and not feel tired after it. The hours I spent gardening, digging, weeding, and moving heavy plant pots.

And frustration soon took hold as well. Frustration at my memory loss and blunted mind. And the knowledge that this disease may be treated, the signs and symptoms may be moderated but not cured. Frustration at having to stop half way up the stairs because the fatigue and pain in my legs forbid another step.

And fear of the future. I don’t know what it will hold, but it will be more difficult that I had planned. I have to let go of some of the dreams I had – I’ll never climb Mount Everest or Swim the Channel (not that I had planned to, but I always believed if I tried hard enough I could have). I worry that I will get worse. I worry that I will make my family into carers. I worry that I won’t be able to do enough for them. I worry that I won’t be able to do enough for myself.