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.

One year on…

Depression, Fitness, Lifestyle, Pain, Posts, Update, Work

It has been just over a year since I last wrote a post, and, in that time, a lot has happened. You might have known that I dropped out of university last year, following a dip in my health over the autumn and winter. I had a bad experience living in university halls and ended up moving into a rented house with my partner. Shortly after, I realised that university wasn’t for me, and officially finished just after Christmas. Around the same time, I had a few new additions to my medication, a couple of emergency trips to A&E, and a major loss in my social circle.

Having lost most of my friends upon leaving university, and generally having most people ghost me due to my fibro, I was left with barely anyone to talk to. The rest of my social circle is either too far away, or just doesn’t really care.  Luckily, I still had my best friend in the form of my partner, Joe, but other than that, I was incredibly lonely.

Well anyway, I decided to take the advice I had been given, and find my company elsewhere. On mother’s day, I became a mother myself.. to two gorgeous little kittens, Cleo and Layla. As therapy animals, I am allowed to have them in rented accommodation, even if it is otherwise not pet- friendly. As my GP had advised it, my Landlord said it was okay.

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Cleo and Layla have literally kept me alive this year, and have been there for me constantly. In fact, they are currently perched on the end of my bed, sleeping as I write up this post. I will definitely be writing more about them soon, as I have been planning to do a service animal post for over a year now and, to be honest, I could ramble on about my fur-babies for hours.

This isn’t the end of my story though, as there has been a lot more that has happened this year.

Joe has settled nicely into a job now, and we have, just about, got a steady income. However, since I can’t hold down a job, we have had a rough time with money troubles this year, too. At one point, we couldn’t even afford a weekly grocery shop, and Lidl seemed expensive. All things considered, we needed to cut down on our expenditure. It’s now nearing the end of our (quite expensive) tenancy, and so our miraculous plan was to move house, to somewhere cheaper. Funnily enough, the house we found is only 12 doors down from where we are now, is even more beautiful, and is £250 cheaper per month (bargain). I’m hoping that these savings will give me the opportunity to start up my own craft shop, and slowly but surely help us to progress.

Over the last year, I also gained a lot of weight. Having dropped out of university, I suddenly wasn’t walking to lectures on a daily basis, and having Joe’s car meant I didn’t have to walk anywhere else, either. As useful as it is to not be losing as much energy over travel, it also meant I wasn’t burning off as many calories, and these started to build up. Over the space of the year, I went from 9 stone to 13 stone, gaining almost half my original bodyweight in fat. Not only is this unhealthy, it made my fibro more difficult to cope with, and made my self esteem plummet even further. It wasn’t until I had to care for the kittens, and started to form a daily routine, that I started to lose it again. Since August, I have now dropped back down to 11 stone, and I am hopeful that I will continue to lose some more.  Before the kittens came along, I spent nearly every day in bed, and only got up for a few hours a day, when joe came home in the evening. I felt that I had little to no reason to exist, so would hide under my duvet all day, feeling poorly. This went on for months, hence why I put on so much weight.

Note to self: hiding under the duvet doesn’t work for more than a day or so. Eventually, you have to come out.

Thats not the only trouble I had this year, either. Say hello to my nasty little friend, insomnia. Although I have always struggled to sleep at night, it has now reached ridiculous levels. I used to need between 1 and 4 hours to go to sleep, but now, I can be still awake when joe gets up the next morning. It doesn’t happen every night, but still occurs several times throughout the week, leaving me to oversleep through the day and make the cycle even worse. Fun.

I am in the process of applying for CBT, and I am also thinking of asking my GP about sleep medication. For now though, I am completely avoiding caffeine, going to bed early, eating healthily, and trying to get as much fresh air and exercise as I can during the day. I am looking forward to moving soon, as it will give me the opportunity to be more active around the house, as we will be packing, unpacking, decorating, and sorting the garden, most of which I will do whilst Joe is at work. Hopefully, this will help me to lose weight and sleep better too, fingers crossed.

For now, I would love to get back into writing on this blog, as I realised today just how much I have missed it. Keep an eye out over the next few weeks for some more posts, as I will definitely be writing again now I have written this.

Let me know if you have any questions or advice, I’m always open to comments and love to hear feedback!

Bye for now 🙂

 

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.

Explaining your chronic illness to children

fibro fog, Help for friends, family, and significant others, Help for sufferers, Lifestyle, Pain, Posts

I don’t know about you, but I’ve found that one of the hardest parts about having fibromyalgia (aside from the obvious) is being able to communicate what it means. Usually, people get the gist if you compare it to something more ‘normal‘, like being hit by a bus, for example. When it comes to kids, however, it gets a bit more complicated.

I find that, being the “cool” and “fun” auntie that I am *winks*, it gets difficult to tell children why I can’t play or pick them up or run around all day. It’s particularly heart breaking when you notice that they stop liking you as much. In general, though, I find that kids are very accepting of me being ill, it’s just a case of explaining why I don’t get better.

Here’s what I have found out:

1. Children struggle to understand long term illness.

If I tell my niece I am poorly, she gets it, but she expects me to ‘get well soon’ (as she wrote on the adorable card she had drawn me one time). It is difficult to explain that this won’t happen, so I try to make it easier by explaining from the start that I always feel like this. Don’t forget, it can be quite distressing from a child’s point of view, to be told that your grown up friend is always unwell- I’ve occasionally been asked by kids if I am dying, or if I am sad. Obviously this is not the case, but it might look like it to them. To help with this, I make it clear that when I am tired, I might look grumpy, but it doesn’t always mean I am, and that otherwise, I am perfectly healthy. Don’t be afraid to repeat this, as children often forget these things, and may not remember that you are okay.

2. A magic kiss or rub doesn’t make it better, but it’s cute that they try.

When my niece gives me a hug to make me feel better, it is important that I say thank you, and let her know that it cheered me up. It might not make my pain go away, but the fact that she tried is nice, and she deserves a thank you for going to the effort to make me feel better. Seeing a positive outcome will also teach her that she is doing the right thing, and being nice to someone really can help a little bit, even in the worst scenarios. This is a lesson that will keep her going throughout life.

3. Being responsible for a child is just as mentally draining as it is physically.

I know that my brain will struggle to keep up with a child’s fast pace, and I have to remember to take a break every now and then, so that I don’t wear myself out. A good way around this is to tell your child that you need a nap, they will leave you for a good half an hour to get some ‘me’ time, as far as I’ve learnt. Kids are very understanding about being tired, since they also need plenty of sleep, and I tend to find that they have no issue with letting you (pretend) sleep. You must also consider that the responsibility you hold for that child is important, so if you do feel like you can’t handle the situation, get another adult to step in whilst you take a break.

4. I’m not as strong as most people my age/size/gender, so I can’t pick them up.

Depending on the ‘format’ of your child, they might be a little on the large size, but still want picking up (i.e; a 5 year old who wants you to play). Since I am a petite 5.2″ female, I struggle with anyone over the age of 4, since they can get rather heavy. I let my niece know this, and she understands that although she is allowed to sit on my knee, I am not strong enough to pick her up all the time. She then runs to her uncle and asks him instead (teehee). Occasionally, she forgets this, but a brief “sorry, I’m not strong enough, why don’t you ask …….. instead?” does the trick.

5. I’ll be sacrificing my whole week if you ask me to baby sit for the day.

I don’t like confrontation, and sometimes, I just can’t say no. However, I know it is important to remember that you do have the right to say no whenever you like, and especially if it will effect your health. As a rule of thumb, I won’t babysit for anyone for more than a few hours, since I know that it will leave me drained. If I have to, I make sure I have the help of another adult, who can take over when I can’t. If a child asks me to spend time with them, I generally give them about an hour or so before telling them I have important adult stuff to do. Remember, it is important to spend time with the children in your life, but don’t over do it if it will make you ill. Likewise, don’t be mean to them, a simple explanation will work just fine.

I hope this helps you to explain your situation to the children in your life, whether they be your own or someone else’s, and for any parents out there, don’t forget to think twice before asking a friend to babysit. It might not be as easy for them as it is for you.

Don’t forget to comment if you have any tips for childcare with chronic illness, and let me know if this post was helpful at all- I love to hear your feedback.

See you soon, guys.

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!