Fitness for fibromyalgia sufferers

Fitness, Help for sufferers, Posts

24/08/2018

I’m really unfit, no joke. I can’t even walk upstairs without getting breathless. It’s not because I am overweight, though, I just don’t have the muscle strength.

At 5.2″, I’m only tiny, but once upon a time I used to be pretty strong for my size. That all changed when I was diagnosed, because muscle weakness took over. Now, I’m back at square 1 and determined to get on track again. If there’s one thing I’ve learnt, your health gets even worse when you spend 18 months in bed.

Today, for the first time in 2 years, I used a gym. I didn’t do much, only 25 minutes, but I feel so much better. I’m happier than I was an hour ago, and my body feels fresh and energised. I don’t want to hide under the covers any more. Best of all, I have a good excuse to have an hour to myself for a relaxing bath.

My plan is this:

After today, I’ve got another week or so with the same schedule, so let’s see if I can work out every day, and push myself to do more. I’ll use my usual pacing routine to stay within my fibro limits, but aim to add an extra set of reps to each exercise per day, so that I can gradually progress. I’ll update you in two weeks time. Let’s see if I can beat my best.

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1/11/2019 (14 *ish* months later)

Okay so that didn’t work. I felt great about myself for the rest of the day, and then I slipped back into my old ways. In fact, I ended up feeling so crap within the next week or so that I stopped blogging and forgot all about this post… until today.

If you read my post from yesterday, you will know that I put a load of weight on, and then started to lose it again. So what does this mean? Well, for starters, exercise does really work. If you burn those calories, you will lose weight. However, you need to do it sustainably. This means doing exercise that you can keep up with on a regular basis, that will last you forever (or at least for a long time). My plan had no sustainability at all. For a healthy person wanting to exercise, it would be great, but I didn’t take into account that I have to work around my health.

I realised this year that the large amount of walking that I did at school and then at university was what kept me slim. It was super sustainable since I had to do it anyway, and it was a simple walking route that I did repetitively with little variation, making it easy to manage. Then, moving to live on top of a hill (uh oh) plus losing my usual routine, meant that I suddenly didn’t walk everywhere like I used to. It took a while to get myself back to normal, and when I did, it was by using my pre-existing daily activities as exercise.

I decided to focus on increasing my activity levels mostly when I was doing something useful. For example, I found it difficult to wash the dishes because it hurt to stand there, and I got a lot of brain fog and would end up dropping my favourite ceramics. The sink had started to pile up, and I felt nauseous when I thought about washing dishes. Instead, I put some music on, and did what I could whilst singing along (plus occasional dancing). It kept my legs and back moving so they didn’t seize up, and the singing prevented the brain fog from kicking in. I ended up doing a full set of dishes, no problem, and the clean sink actually made me feel good for once. I now do this every other day in small doses, and haven’t smashed a glass in a couple of months.

More often than not, it turned out that I was procrastinating the easiest stuff, and actually, my life was a lot easier when I just did it. The little extra  bits of activity built up throughout the day to burn more energy, too, so I started to feel and look a lot healthier. In the end, I nearly doubled my steps, just by doing what I wanted, rather than putting it off out of laziness or fear. The best bit is, the more you do, the more normal it feels, so over time, you can gradually build yourself up to having a more active lifestyle, whilst getting something enjoyable (and useful) out of it too.

I’m not super slim anymore, and I’d still call myself overweight, but I am much more active than I was a few months back. I can sometimes run up the stairs, I can carry more than one bag of shopping again, and I don’t find it quite as difficult to have a shower anymore. I’d say that’s an improvement, right? I can’t call it a miracle cure or anything, but simply doing that extra little thing that I had been putting off every day or so has gradually led to a better version of me. I still don’t do exercise, and haven’t stepped foot in a gym since I last mentioned, but I find my exercise though my daily tasks instead, and it’s just enough for me.

Share with us below; what is your favourite routine? Do you get much exercise or will you be starting something new? I’d love to hear about your progress, or if there was anything you learned to avoid after your diagnosis.

Travelling with illnesses: dealing with hot weather

Help for sufferers, Posts, Travel, Travelling with illnesses series

A big issue with travelling abroad is that, often, you are visiting an environment which is different to your own. The problem with this? Drastic temperature changes can seriously impact your health, and moving from your usual climate to somewhere super hot is pretty much a recipe for disaster. These are a few things I do to minimise its effect on my fibro:

1. Drink plenty of water.

Hydration is key to dealing with heat, so make sure you top up constantly throughout the day. Rehydration sachets also come in handy if you start to fall behind, and consider carrying a water bottle when you are out and about to avoid sweating out too much H2O when you don’t have access to drinks.

2. Battle the chub rub.

Those of us who suffer from chafing; whether it be in the thigh area, under the arms, or somewhere else altogether; know just how much of a nightmare hot weather can be. There are a few tried and tested methods out there that can help prevent the dreaded chub rub, and it’s worth investing before you go, so as to tackle the problem before it starts. I like to put a layer of roller deodorant on my affected areas, and then top this with a good coat of talc. Sometimes, though, it’s easier to play it safe by making sure there’s a layer of fabric between the two points of contact (I like long, floaty trousers for this).

3. Fatigue.

Fatigue is pretty much a constant when it comes to fibromyalgia, but this can spiral out of control when the temperature comes into play. Make sure you have plenty of rest, seek shade as much as possible, and consider a decent fan as back up. Don’t forget to make use of your usual fatigue coping techniques, as these will help to keep your day to day problems at a minimum.

4. Fainting.

I don’t know about you, but I have a bad habit of fainting when I get too hot or too cold. Try not to over do things, and pace yourself as much as possible. It is best to have someone to accompany you if you feel like this may be a problem, and if you do start feel faint, alert someone nearby before lowering yourself to the ground. The aim is to get blood flow to your brain, so laying on a level surface, putting your head between your knees, or even putting your legs up against a wall, are all techniques which help with this. Stay low to the ground to avoid heavy falls (if you do happen to lose consciousness, you don’t want to hit your head as this may cause concussion, so preventing falls is very important). When you feel a little better, make sure you have some water and something sweet to boost your blood sugar. (N.B: a good excuse to eat chocolate!)

5. Clothing.

It is important for any vacation that you pack the right clothing for your destination, but it is especially so when you have an illness to think about. Personally, my fibro makes me very sensitive to temperature change, so I find it vital to pack the right clothes for my holiday. Try comfortable, loose fitting clothes in light colours in order to aid ventilation and reflect sunlight. However, remember that all climates are prone to temperature variation, and you may find an unsuspected cold period knocks you off course. Thus, always pack a few warmer layers that you can play about with depending on the forecast. Furthermore, hot weather often results in other problems, think: sweating, chafing, heat rashes. Make sure you choose breathable fabrics which are itch- free and easy to wear, and avoid piling up on accessories. For all of my ‘feminine’ followers, I avoid jewellery in case of theft or loss, but also because hot metal and skin is NOT a good combo. A sunhat and glasses will suffice during the day, and one multipurpose necklace and a set of earrings add glamour for a night out. Finally, don’t forget to bring comfortable shoes, especially if you plan to do lots of walking, so as to avoid blisters and athlete’s foot. A simple pair of worn in pumps or sandals will do perfectly.

Depression and Fibromyalgia

Depression, Posts, What is fibromyalgia?

Author’s note: A while back, I had a little help coming up with a post idea, and I wrote it up, but never got round to finishing it. Well, here it is, finally completed, more than a year later. Better late than never, I guess…

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My wonderful mother-in-law gave me an idea tonight whilst I was talking to her, so I decided to take her advice and write a post on it.

She told me that I should look into the effect that fibro has on my mood (and vice versa) to see if (and why) there may be a correlation between the two. My response is this:

Yes, fibromyalgia does have an impact on my mood. A BIG ONE. The multitude of horrible facets that fibro gives you; the pain, the tiredness, the forgetfulness, and so on, mean that it’s very difficult to stay positive. For me personally, antidepressants are a must, but there’s loads of other things I try to do on top of that to help me stay happy. I keep tidy (OCD plus chronic illness is a recipe for disaster), eat healthy, do things that I enjoy, and surround myself with positive people, plus many other little touches; all of which keep me happy(er). Obviously the odd low mood is inevitable once in a while, but I try to keep it under control as much as I can.

Furthermore, my mood ALSO has an impact on my fibro. We all know that having depressive symptoms can leave you feeling under the weather in terms of your motivation, but it also effects the physical body too. I find that when I am down, my pain levels reflect this and my energy levels drop as well. In addition, I have a greater sensitivity to temperature change, noise, and brightness, and my cognitive abilities begin to deteriorate. I can safely say that yes, my mood does impact my fibro, although why I have no clue.

Funnily enough, it shouldn’t be a surprise that my mood and my fibro are interlinked, as they are co-morbid with each other. This makes sense, since both are thought to stem from issues relating to the nervous system. Due to this, I have been prescribed a very useful form of medication known as an SNRI. If you are unfamiliar with these, they are a type of antidepressant which effects chemicals within the nervous system (serotonin and norepinephrine, to be exact), and has the simultaneous effect of dulling my pain and lifting my mood. Bonus.

Now, back to the original question, I can safely say that my mood and my fibromyalgia are interlinked, especially since they are co-morbidities. However, the exact reason as to why can only be explained with the development of fibro related research. As for now, we can only guess that it is due to neuropathic structures and the role of the nervous system. I wrote a similar post to this, explaining a few theories as to what causes fibromyalgia, so you might want to check it out here. I will also be writing a few more posts soon which will relate to this topic, such as what symptoms are common, what co-morbidities may be linked, and some more scientific explanations surrounding fibromyalgia.

In the meantime, let me know if you have any of your own science-y questions, and I’ll try my best to answer them (no promises- it’s been a while since my A-levels!). Likewise, if you think you have an answer, I’m sure we would all love to hear it.

 

Travelling with illnesses: what I was told.

Help for sufferers, Posts, Travel, Travelling with illnesses series

So I’ve got an apology to make. I haven’t posted anything in over two weeks. This is partly because I have been suffering (more on that soon), but also because I’ve been jetsetting.

For the last two weeks, I’ve been in a beautiful little country called Laos, making an attempt to help those less fortunate than me. Not only has it been one of my lifelong goals to travel, but spending time there helped me to improve who I am as a person, and truly push my limits to the max.

Of course, traveling with fibro, or indeed any other chronic disability, can be a bit of a challenge. Whether it be the plane journey, the climate differences, or the new activities; travelling can be a pain (literally!).

Throughout the next week, I’m going to be sharing a little about what I did over in Laos, along with giving some helpful tips for you to remember the next time you’re abroad.

In the meantime, here are a few suggestions I was given whilst away, that you might like to try out for yourself…

1. Be mindful.

I was told that one of the most important parts of looking after your body involves being able to listen to what it has to tell you.

Next time you have a quiet five minutes, get yourself comfy and listen. Start by breathing slowly and deeply, counting your breaths and feeling your body relax as you do. Then, focus on each part of your body, starting at your toes and working up to your head, and allow yourself to feel what’s going on there. Forget about your stress, forget about the outside world, just focus on you. Once you reach the top of your crown, allow your mind to accept and then let go of those feelings, and then concentrate back on your breathing.

This time, try and empty your mind, and allow any new thoughts, feelings, or worries to float through your mind and be let go. Spend a few moments like this, allowing your mind and body to relax and push aside any mental or physical problems for the moment.

2. Get a massage.

Sometimes, having a massage can really help you to relax, and what better way is there to treat yourself than to soothe your body and ease any achy muscles? Next time you have some spare cash, book yourself in to your local spa; or if you prefer to spend a little less, get a close friend or family member to spend some time with you for a pamper evening, where you can help each other.

3. Try yoga.

Personally, I haven’t had the chance to properly test this one out yet, but loads of people have told me that it is worth the effort.

Start simple and spend five minutes each day stretching out your body and focusing on breathing exercises. As you adjust, build up your routine to focus on longer, more complicated yoga positions. If you need inspiration, just try searching your fave social media for some yoga advice, as it is a popular hobby that is widely available online.

Do you have any advice you’d like to share, or an idea to try? Or, maybe you have something to say about what I’ve shared? Let us know what you think in the comments below, and don’t forget to like and share if you enjoyed this read!

Thanks guys!

What is ‘pacing’ and how can it help my fibro?

Help for sufferers, Posts, Work

Plenty of people with chronic illnesses like to talk about pacing, but if you’re newly diagnosed or have only recently started looking for advice, then you might not know what this is.

Pacing is a method of coping with the fatigue-like symptoms often associated with chronic conditions such as fibro. It involves creating a broken down or spread out routine, so that tasks can be separated into smaller, more manageable chunks. This ensures that you can concentrate longer on tasks by giving yourself small rest breaks in between.

For example, I like to split up my daily chores, study sessions, and various errands by having at least five to ten minutes of nothing for every hour or so. After a while, I have a larger break, and if I’m struggling, I will increase the frequency of my breaks. If you don’t like to sit and do nothing, try doing something easy that takes little energy (mental, physical, or otherwise) and is a distraction from your task.

(N.B: From here on it gets complicated, so you might want to skip the next paragraph if you dont fancy the heavy reading!)

The next question is this; how do you figure out your rest to work ratio? Well first of all, you need to spend some time figuring out how long you can go before you lose the will to live. This is how long you can go before you need a big break. Then, try and count how many times within this you get distracted; this is how many mini breaks you need. Spread them evenly within the time frame, and aim for between five and fifteen minutes for each break. you can alter this to your taste later, if necessary.

If all of this sounds too complicated, just remember to aim for 3:9:10 (for every 3 hours, have 9 equally spaced lots of 10 minute breaks, so every 20 minutes have a break). Or, have a 10 minute break every so often if you can’t keep count. Don’t forget as well that you can mix up the same ratio for smaller or larger amounts of time, and for every 3 hours, have at least half an hour or more to recuperate.

Most importantly, though, is to remember that you aren’t aiming to get loooaaaddss done, but to work at an efficient pace that keeps you healthy and happy. If you can’t do as much as you thought, that’s okay. Just stop for the day and adjust accordingly tomorrow.

If you like my pacing method or think you have something to input, please help us all out and let us know in the comments.

Thanks for reading!