I have somewhat neglected you all over the last two weeks, but not without good reason.
As explained in my last post, I had a bit of a fibromyalgia flare, a nasty cold, and a busy week at work just two weeks ago, and my main aim in life at that time was to simply just get through it. Then, last week, I was on holiday with my beautiful family and we needed time to be together and I realised that despite the plans to blog while I was away, I really just needed the time to recuperate following my flare and illness.
The week away was just what I needed. I wouldn’t say it was restful, at least not in the physical sense, but it was restful for the mind. I felt like I had some much needed time to do the things I love, be active and just to focus on our little family unit.
By the end of the week, I’ll be honest, I hurt from head to toe, and felt more tired in a physical sense than I have in a long time, but that what happens when you throw yourself down one too many waterslides! However, the pain and fatigue was worth the pleasure of having the fun, and after a very restful weekend at my parents (god bless them) I now feel recovered from my holiday antics.
The thing with holidays and other fun times with fibromyalgia, is that the fibromyalgia can often leave you feeling scared to have fun, scared to let go, and scared to delve into the unknown. You worry that your actions will bite you in the ass the next day, and that fun for one day will make you pay for a week or more. You worry that by being ambitious with your actions too soon into the holiday will ruin the rest of the holiday, not only for yourself but also for your family.
Half the battle for me is not worrying about what may or may not happen if I decide to just let go and have fun. I find it hard not to wake up the next day and automatically scan my body for aches and pains. I worked really hard on this holiday to pretty much push the pain and other symptoms aside for the short time we were away, and to say ‘sod it’, but I did this within reason and dropped in some things that were good for the fibromyalgia here and there.
The holiday had a welcome spa session mid way through and this most certainly helped. 3 hours of relaxing and using all of the things that I know help my pain like aromatherapy, heat and mindfulness, most definitely undone some of the damage of a little too much fun. As a family we also made good use of the pool every day, and hot whirlpool too, and this helped my symptoms enormously.
By taking the time to think about your holiday, recognising the upper limit of your abilities and looking at what you have on offer to help with your symptoms, you can make so much more of your holiday. Also being honest with your fellow holiday goers helps to control their expectations of what you can achieve. And yes, it may hurt like a bitch when you get home, but by taking a little time after to reset (remember if you are employed to factor this into when you return home and then to work) you can recover. For me this meant enlisting the help of my parents, and actually not being at home where I would be tempted to unpack, do the laundry and the housework.
While it is important to mentally ‘let go’, it is equally important not to let go of all the things that you know help and you are able to easily continue. I maintained my sleep hygiene, my step count, my physiotherapy and my anti inflammatory diet (with the exception of one dairy ice cream) throughout my holiday which enabled me to do far more than I ever anticipated. I returned from holiday feeling tired, but accomplished, and that I had achieved something amazing for my first holiday away since being diagnosed. I now can’t wait for the next one in 7 weeks.
I’d like to know from fellow chronic illness readers what you have learnt about making the most of your holiday? What works for you and how do you feel about letting go? Feel free to share your thoughts in the comments below, or over on my social media channels.
Hugest apologies for the quiet blogging activity this week. Its been a challenging week. This is just a short post to explain why and to show you I’m still alive!
This week I got my first cold of this year after working hard on repairing my immune system following last years insult. While on the one hand I was celebrating not getting a cold in so long, I was also feeling sorry for myself as when I get a virus, my Gilbert’s Syndrome kicks in and makes me tired, and my fibromyalgia loses the run of itself a little. However, it was short lived, no time off work was required and despite my laziness in the kitchen I have still managed to remain gluten and dairy free. Every cloud…..
Coupled with this was my last week of a phased return at work and a ramping up of activity as I am no longer wrapping myself up in cotton wool and avoiding stressful situations. After all, I am there to do a job and do it I will. I am learning it is not the stressful situation itself that causes a peak in my fibromyalgia symptoms but rather the way I handle them. I am almost at full time hours and this is making me more tired than I would like to be, but think this is mainly because I have been poorly too. My main thing to work on when I get back is taking an actual break now my hours are going to be full time, I’m terrible at taking a break and I know it will make me unwell. I get so into things that I find it hard to walk away for the short 30 minute break I need. Any suggestions would be welcome!
In order to get thorough the week I decided to just focus on getting over the cold and getting through my week at work. I can honestly say I haven’t done much else, but I did get through it. However, it meant that I had to withdraw myself from social media, blogging and awareness raising for just a little while. I also had to skip my submission for a magazine article in July.
Do I feel bad about this? Hell no. My blogging and social media awareness activities are not my job, midwifery is. My health and family equally come first and without either I am not very much at all. Midwifery comes up very quickly behind in third place. So these three things had to be my priority this week.
I am now on annual leave (yippee), and all packed up for a few nights away with the family. Countryside, walking, family, and fun awaits, and so does my blog. I’m planning on using a little of the time on blogging, without the time constraints I am usually against, but the holiday fun will of course come first.
Over on Instagram I will be sharing some of the highlights of my holiday to demonstrate that despite chronic illness, spoonies just want to and can have fun. It doesn’t come without its challenges but the fun will far outweigh the consequences.
For now, I am relaxing with the tigers, on the sofa, dreaming of the country. I’m planning my next weeks posts, and reflecting on the week that has just been. I’m focusing on how I can use my week off work to get a better handle on the fibromyalgia as I have kind of lost my grip on it with being ill this week. Finally I am hoping that ALL of you have had a blessed week and are happy with life.
I hope you have had a good day. Friday is almost here! I was incredibly glad to come home today after initially going many miles in the wrong direction on the wrong train and then getting wet in the rain!
Following on from last weeks blog post introducing me and my fibromyalgia, I promised to get the nitty gritty of how I thrive with The F Word. All opinions and thoughts in these posts are my own and as you will know, I choose to keep this blog a positive space, full of proactive advice of how fibromyalgia can be addressed naturopathically. However, I also feel that sharing the reality of living with a chronic illness is important in raising awareness.
That being said, I do still want to keep the blog as positive as possible, so instead of just moaning about my fibromyalgia, I thought it would be useful to talk about what has changed so that it doesn’t completely ruin my life. At work today we had the most inspiring woman come and speak to us about leadership, and she spoke about viewing obstacles as opportunities. While this is incredibly helpful to me in my role at work it sprung to mind that this is exactly the way I approach my fibromyalgia, and I am going to use this framework to describe to you how my life has changed with fibromyalgia, and how I feel it has actually changed for the better. Every cloud has a silver lining and all that jazz.
I thought I would start with focusing on how it has affected my home life, with those people who are nearest and dearest to me. I can’t list everything but I thought it would be useful to share what are probably the most common problems with fibromyalgia, and without action could become the most distressing.
I am blessed enough to have been married for 11.5 years to Matthew. Each day I give thanks for the man that asked me to marry him one rainy June evening in Guildford. We have amazing twin girls Edith and Emily, aged almost 7 (we are reminded every day). We live in Greater London and have done for 13 years. Both Matthew and I originate from Portsmouth (South Coast of the UK for those overseas readers), and so ALL of our closest family members are still there, so we have no family nearby.
Obstacle #1 – We have learnt the hard way that all work and no recovery is really not healthy for anybody and we had the balance all wrong. We were constantly working opposite shifts, leaving each other alone to parent and do all of the things that being an adult encompasses. We were often chasing rainbows and always looking for what was next and looking for more, instead of embracing the moment and being content with what we already had. This was incredibly draining for both of us and on refection probably expedited the onset of my fibromyalgia, but I think a lot of families are like this. The rapid onset of my fibromyalgia left me in incredible pain, hardly able to stay awake yet not be able to sleep (not sure how that works), and very distressed.
The opportunity – Something had to give, and once I considered going back to work, it first meant a change in working hours for us both. There was no way we could go back to the ways things were without either destroying me or putting pressure on our family relationships. While this is coming at a financial sacrifice, I firmly believe that money does not buy you happiness, but balance in life does. We have both been lucky enough to have had our offers of how we can offer our best to our employers accepted, which means that although we are both work more ‘days’ per week we are now working less hours per day. We are now able to divide up the house and family responsibilities more manageably, and have more time together as a family each day. There is now no day that will go by where I will not see my husband or children because of work (before I would often go at least a couple of days without seeing them). We are less tired when we are together which ultimately means that the time we do spend together is of better quality and everyone is in a better mood. Our mental health has improved immensely. The girls know what to expect from their day and kids love routine. For my fibromyalgia this means that on the whole my symptoms are much more manageable too.
I have also discovered the art of mindfulness and gratitude because of fibromyalgia. I am now seeing clearer than ever and am honestly the most content I have ever been in my life despite being in constant pain and feeling almost always tired. By giving thanks for what I already have, I naturally want less. By wanting less, I no longer feel that horrible feeling of discontent, that I am not good enough. I no longer feel like I am failing as a mother, or a wife, and as a result my mood is lifted and a good mood gives me momentum to continue with the good habits that are best for my fibromyalgia.
Obstacle #2 – Long gone are the days where we could stay up late together and watch our favourite TV programmes or a film. I need to stay away from screens and blue light for a good 90 minutes before I sleep.
The opportunity – Due to the change in what I can or can’t manage, even simple things like watching TV, we have been able to reacquaint ourselves with old passions. We are now reading more and actually spend more time talking. We listen to more of our favourite podcasts together, and are discovering new ones to listen to. We are actually getting to bed a decent hour and sleeping better as a result which directly impacts our moods the next day. Just because you can no longer do one thing doesnt mean you can’t have fun in other ways.
Obstacle #3 – We now need to be more mindful of what we do together, and as a family on our ‘rest’ days, in order for me to stay well and to maintain the strength in our family unit that we have worked so hard to achieve. At present long day trips out are a struggle for me and often it isn’t until the day that I know whether or not I am capable of going out on that long anticipated trip. This can lead to frustration and disappointment for everyone.
The opportunity – We no longer tell the girls when we are ‘thinking’ about doing things. This isn’t because we don’t want them to get excited, but because we don’t want them to be disappointed. Matt and I will often talk about what we could do at the weekend but this is dependant on how we are all feeling on the day, and we decide when the time comes. What is great about this is that the girls now feel less entitled to do things outside of the home for fun and more thankful. If we wake up and everyone is having a good feeling about the day we suddenly spring a surprise on them and their excitement is infectious. It also feels a little more spontaneous which adds to the excitement factor. Matt and I now have a better understanding and respect for each other and that despite plans, sometimes one or both parties may simply not feel like doing what we have planned. This has also led to placing less pressure on each other to ‘perform’ as such, which leads to a better relationship. I would also say we now know each other better than ever.
Obstacle #4 – Household chores are more draining for me now, so I pretty much have to schedule them into my day instead squeezing them in when I have time. Sometimes, rest has to be prioritised over the hoovering and this can lead to a messy house, which then makes my brain feel cluttered.
The opportunity – With our new working hours I have been able to allocate a time of my day (god that sounds boring) where I can stay on top of the chores around the house. This is done in balance with rest time and taking time to do the things I enjoy. Routine is incredibly helpful in managing fibromyalgia, and I know that the time of the day I allocate is just enough to get all the little jobs done without rushing. As a result, particularly over this last week, the house is tidier and cleaner, but without the feeling that it has been hard work. I spend less time looking for things and more time with my family. I no longer stress about the house being messy because it simply isn’t that bad. I also don’t have to worry about when things are going to get done because I know they will get done, when the time is right.
It is possible to still lead a happy and fulfilling life with fibromyalgia, and I would say that the first place that changes have to be made is in the home. The home should be the place you feel safest, and most content, so it makes sense to get this right before you move onto anything else. If you safe space is a place where you can manage your fibromyalgia well, then you can begin to build the other areas of life around this, knowing that you can always come into this space when the going gets tough.
Please come and say hello to my on social media 🙂 and let my know what opportunities fibromyalgia has presented to you.
With fibromyalgia awareness day this week, tomorrow in fact, I’ve been trying my hardest to work out what to do away from my usual blog posts to raise more awareness. At present my blog is aimed at those who already suffer from fibromyalgia and some of the gentle, naturopathic things we can all try in an attempt to keep the fibromyalgia under control. Some of this information may be useful to others but it doesn’t really get under the skin of what fibromyalgia can do to a person. I realised today that apart from my initial posts around diagnosis, see here and here I haven’t really done too much about how fibromyalgia affects me, as a wife, mother, worker, friend, keen socialiser, and human being.
So I thought I would start a series of posts about how fibromyalgia has affected my life in order to raise awareness, paying particular attention to the different aspects of life that fibromyalgia can invade as part of its wicked plan to knock us warriors off our feet. My aim with this series of posts is not to simply talk about myself, as although I am ready to share openly when people ask I’m not one to just rabble on about myself all the time, but to raise awareness into just how crippling and down right annoying fibromyalgia can be. This invisible illness is so unpredictable, and I don’t think anyone can ever have it truly under control but it can be managed. I would so love the world to understand, empathise, and be aware of just what figromyalgia is. Over time I am also hoping to use this space to share your stories, and highlight the truly evolving nature that fibromyalgia has for each individual affecting us all so differently. We also manage things very differently and although I am treating mine naturopathically there are warriors out there who have to use medication and have other chronic illnesses alongside fibromyalgia.
The aspects of my life I am hoping to cover include, but not limited to, family life, friendship, mental health, exercise, and work. For this week I thought I would share a little more about the me before and after fibromyalgia made an appearance and in the following weeks I’ll get more into the nitty gritty of it all, as well as talking about some things that help me to manage these aspects of my life as a fibro warrior. Obviously I can’t write about everything but I will write about the things that I think make me who I am. So here goes…….
My name is Sarah and I was born in Portsmouth, UK, in 1983. I have been blessed to have two brothers, Paul and Graham, and 4 step siblings through parents remarrying. I grew up in a working class background, and although I won’t dwell on it my childhood wasn’t the most stable (only through fault of one person who doesn’t deserve to be named let alone make an appearance in this positive space). I am still thankful for many things from that time of my life. I went to a state school and had a happy school life with friends who I am still in contact with today.
At 18 I met my husband and at 21 spread my wings and moved to London. I had just recently qualified as a midwife and was desperate to move to an exciting new place and to escape the hum drum of white working class life. I wanted to be surrounded by equality, acceptance and cultural differences. I began working at a marvellous busy central London Hospital and carried out many midwifery roles there. I am still part of this amazing team today in a Midwifery Sister position with incredible colleagues and surrounded by amazing women going through a life changing journey every day.
At 22 I married my beau, and we have been married for 11 and 1/2 happy years. After a long battle with IVF we found ourselves expecting twins, Edith and Emily, who were born in 2010. They make me proud (and frustrate me) every day.
In 2012, we sadly lost my younger brother to a chronic life limiting condition at the age of 19. I can hand on heart say that this is the most difficult experience I have ever had to journey through. Bereavement is exhausting.
I am a keen runner and have completed more races than I care to remember, along with my husband, and these races include four London Marathons. My last marathon was in April 2016 and my last race in June 2016.
I love to bake, cook, sew, knit, garden, read, walk, eat, socialise and generally be out in the daylight.
In 2016 I was diagnosed with Fibromyalgia after months of being unwell. Many people take years to be diagnosed but I am forever thankful to the support of my hospital colleagues without which I wouldn’t have been seen and assessed super quickly so that I could grow and move ahead with my life. Second to losing my brother, this is the most difficult journey I have ever had to experience, as prior to this I had always been healthy with no complaints except the odd niggle.
Fast forward to today. I still love to do all of the things above, but cannot do them as often as I want, if at all. I still work as a midwife but my days have to be very prescriptive and protected from risk to allow me to continue this work. I am obviously still a mother, wife, and friend, but find my tolerance levels lowered and I’m generally more antisocial, not through choice but through necessity. I do my best to save my grumpiness for close family and myself. I’m good at smiling.
Today I have a desire to share more than I have ever shared in my life. I want to learn. I want to love. And I want to live. I want to share this journey with you all, as the things I have learnt throughout this journey have almost served as an awakeneing. Anybody can benefit from what I have learnt and am still learning, whether you have a chronic ill was or not. I want to reach out to the chronic illness community and get to know you all. I am more content today than I have ever been in my life, and that doesn’t mean that each day isn’t a struggle, believe me it is, but with the right mindset and support I am able to manage this to the best of my abilities. Am I well? No. Will I ever get well? Probably not. Am I happy? Most definitely.
So this is me. Please pop along and say hello either in the comments section below, on Instagram, Facebook or Twitter. I would love to get to know you and for us to go through this journey together, to learn from each other and to find peace and happiness with the hand we have been dealt in life.