Only the one post this week as I’ve been unwell all week. Catching a cold on top of chronic illness makes everything so much more difficult and today is the first day I’ve felt well enough to do much at all.
Yesterday there were protests around the world to raise awareness of Myalgic Encephalomyelitis and the need for more research funding. I wasn’t able to go to a protest (nearest one was interstate) so I posted links to my social media accounts to promote it.
The millions missing campaign used empty shoes to represent how many of us are missing from every day activities.
What is your favorite go to beverage? Water, coffee, tea, coke, soda (non-alcoholic)
Water is my normal go to beverage. Occasionally I have bubbly water from the soda stream or a tea, but most times I just have water straight from the puratap.
Can you change a car tire?
To be honest, I don’t know. I’ve never been in a situation where I’d need to and I’ve never tried. I know the theory of how to do it though.
Are you a listener or talker?
E would say I talk a lot, but usually only with him. In general, I’m a listener.
Would you rather have no internet or no cell phone?
No cell phone. I could live without my phone as I’m home most the time so I can use the home phone but the internet is a large part of how I connect with the outside world.
Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
I’m grateful for being well enough to go along to the rogaine with E on the weekend. I’m also glad E liked his birthday present (even if he guessed what it was the day before his birthday)!
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In this next week I’m looking forward to feeling better! I feel a little better today and I hope that continues as the week progresses.
I meant to do this post last week for May 12 International Awareness Day but brain fog made me forget the date and I didn’t have the energy last week to write it anyway so here it is today…
A little background for those of you who haven’t been following me for very long. For over 3 years now I’ve been living with chronic pain and fatigue as my daily companion. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Pelvic Congestion Syndrome.
I’ve already done a day in my life post, since then I have improved to the point that I try not to nap during the day any more.
What I do in a week
The following is what I did in the week starting Monday 9 May… It gives a good idea of what I do most weeks. The types of appointments and work I do varies week to week and the number of crash days also varies.
Monday
I wake up slowly at around 8:30 am noticing the heavy and aching feeling that’s always there. After stretching in bed and slowly getting up I measure the 0.5mL of testosterone cream and rub it into my leg and then slowly get dressed.
After getting dressed, I sit back on the bed and spend some time checking my emails and my to-do-list, and waiting for the heaviness and shakiness to settle enough to get up and make breakfast.
I’m feeling rather out of it today so I take my time doing my weekly budget review and spend some time online reading blogs. The fact that the weather is very wet and cold today doesn’t help my pain levels. I decide to hop in the bath and read until lunch time.
Being a Monday, it’s my day to do a bike ride. Before having lunch I decide to do a 10 minute easy ride on the stationary bike in the shed because it’s too wet to go out. I reheat leftovers and put the tv on while I eat lunch.
I’ve got some work I have to do today so I spend most the afternoon doing that. Again, tasks that would normally take half an hour to an hour to do are taking me over 3 hours.
Before long, it’s 5:00 pm and my brain is like mush, I put the TV back on and only get up to make a simple dinner and to do some stretches because my pelvic pain is flaring tonight.
At around 9:00 pm I get up, take my pills, have a shower and head to bed. In bed, I take some time to review my daily to-do-list and write a short list for tomorrow. Lights out by 10:00 pm.
Tuesday
I don’t wake up until 9:00 am today. Before even getting out of bed I decide to check my emails and my to-do-list because my body doesn’t want to cooperate.
Today I’m heading to my mum’s to help her with her assignment so after getting dressed and having breakfast I drive down there. Most of the day is spent helping mum. When we finish going through mum’s assignment in the afternoon, we go for a short walk and then I sit down and do my weekly blog posts before attending an online meeting for the conference I’m helping to organise.
By the time the meeting ends my sister has got home from her school placement and we head into town for dinner with E and a few friends from his office. Because E was drinking, I drive us home at the end of the night (that doesn’t happen very often).
It’s a late night out for me but I’m in bed by 10:30pm
Wednesday
Ok, so I did a bit too much Tuesday and that time of the month is starting so pain and fatigue are very high today.
It’s definitely a crash day which means I spend most the day in front of the tv not doing much. I do make myself do my 10 minute ride on the stationary bike because some movement helps with pain levels and I order a few things I need online (cat food and my calcium and magnesium supplements). I also prepare the dough for baking bread the next day.
I shower both in the morning and the night to help with pain. In bed by 9:00 pm.
Thursday
I’m awake at 9:00 am. Fatigue is slightly lower today and I do have a doctors appointment I need to go to. The day starts with a shower and breakfast. I also throw the bread in the oven to bake.
Before heading to my doctors appointment I throw on a load of washing. I drive to town and visit my doctor to get a script I forgot to ask for in my check up the week before. After that I buy lunch and eat with E in his office before I drive home and hang out the washing.
The rest of the day is spent resting in front of the tv, until I shower and head to bed again at around 10:00 pm.
Friday
Up at 8:30 am today and I do feel slightly better today. Dad’s over for lunch today so that takes up most my day.
I do manage to send an email out inviting people to a meeting next week for the conference organising stuff and to do a short ride on the stationary bike and a short walk with my sister who is over for dinner.
In bed by 10:15 pm.
Saturday
After getting up at 9:00 am I head down to mum’s and spend most the day out with my sister op-shopping. I know that I’m doing too much today but I’m enjoying a day out with T while I can.
some of the books I picked up on our op-shopping tour.
In the evening, E makes dinner because I don’t have any energy left and I’m in bed by 9:30 pm.
Sunday
Up at 9:00 am today and throw on a load of washing straight after breakfast. I then sit down and rest for a while before baking a cake. The whole morning is broken down between baking, washing, and doing low energy activities like reading blogs.
I reheat left overs for lunch and then read some of the children’s books I bought yesterday until E’s family comes over for afternoon tea.
I also spend some time prepping for baking bread on Monday and putting together some lego.
I have a bath in the evening after dinner as I’m feeling very achey and end up in bed late at 11:00 pm mainly because I relax too long in the bath.
That was my week last week.
As you can see, my days vary a lot. This was a fairly busy week for me as there were a few days in there where I wasn’t able to have any rest breaks throughout the day at all. That isn’t typical but the rest of it is. I try to find a way to balance work, social, exercise and rest each week.
I forgot to write about the No Buy Challenge in my last few posts and we’ve now got only one week left to go.
This past week I did ‘buy’ one thing that isn’t in my usual purchases, but I don’t see it as being something against the guidelines of this challenge as it was more of a charitable donation than a purchase…
On Saturday night E and I went to a progressive dinner at Monarto Zoological Park (our local Open Range Zoo). The dinner was great fun with each course being at a different location around the zoo and unique keeper talks at the Chimpanzees and Carnivore (Hyena and Lion) Platforms.
As part of the dinner there was a raffle draw and silent auction. We didn’t win the raffle but we did win a unique painting (painted by one of the chimpanzees) as part of the silent auction. The painting is framed and came with two photos showing the chimpanzees painting.
The painting and the photos that accompany it.A close up of the two photos…
The dinner itself was good. Hors d’oeuvres were served at the Chimpanzee platform. Being early evening they were just getting ready to sleep so while we drank wine and nibbled on dips and veggies (there were chicken nibblets as well but I mainly had the dips) we got to watch the chimpanzees make their nests and listen to the keeper telling us about each of the chimps and telling us (in very upsetting detail) about what happened with the recent births (one chimp and her baby died for various reasons, they have one living baby that was born a few weeks after the one that died). We were then taken to the carnivore platform for soup and listened to the keeper who gave out turkey necks as treats to the Hyenas and Lionesses that were out in their enclosures.
After entree, we were taken to the camp site for the main course. A sit down roast dinner during which the silent auction and raffle were concluded and then to the function centre near the giraffe’s for dessert, a wide selection of cakes, sweets, and fruit.
All the food was prepared by volunteers and they did a wonderful job of ensuring there was enough food for everyone and those of us with dietary requirements were catered for well.
Share Your World – Week 15
Name one thing not many people know about you.
I can’t think of what to say here, I’m sure there’s something but I’m so open and share most things that I’m really struggling to think of something…
If a distant uncle dies and you were always his favorite and leaves you $50,000 (any currency) in his will, what would you do?
I’d make sure E and I went on a nice holiday and then the rest would go towards paying our mortgage down sooner. The sooner we have no mortgage the sooner I’ll feel more comfortable with our current lifestyle. At the moment I can’t work that much so we’re pretty much a one income family.
Where do you hide junk when people come over?
I no longer need to hide junk when people come over thanks to my decluttering. In the past stuff tended to go into the spare room or in the shed.
Complete this sentence: I want to learn more about …
Homemaking. As much as I enjoy working when I have the energy, I’m finding I enjoy being at home and having the time to spend on tasks and activities around the house as well. Having such limited energy means that I have to prioritise and most of the time I now prioritise time with family or house related tasks over any other tasks.
Bonus question: What are you grateful for from last week, and what are you looking forward to in the week coming up?
I’m grateful for the time spent with family and friends. As well as the progressive dinner, we had a friend’s housewarming last week and many of my friends have helped me collect material for the workshop I have coming up this week.
This week I’m looking forward to running the ‘wearable art hats’ workshop for children at the Sharefest this weekend. It should be fun seeing what creations the children can come up with from the bottle caps, cardboard, ribbons, buttons and other recycled materials we’ve managed to collect this week.
It’s Christmas Eve and celebrations have begun for our family.
During this time of celebration and busyness, don’t forget to look after yourself. I know that, for our family at least, it is definitely a very busy few days and so over the last few years I’ve had to learn a few ways to manage this.
Don’t forget to pace yourself. For me, this means no more than one or two social events each day (if 2, then one has to be a very low energy event) but even this is much more than I normally do so I’ve decided that I’m going to take a break from here until the new year.
2015 in review
Over the last year I haven’t done as much posting as I have in previous years, it has been the year of Enough. This has meant focusing on getting life more balanced and accepting what I have and what I can do, not what I don’t have and can’t do.
Two of these were written in previous years but are still quite popular today.
During the last year I have begun working again (even if only a small amount each week) and it’s been nice to be bringing in some income of my own. I’ve also been working with my husband and close friends to get the Foggy Frog picture book finalised (we should be ready to publish early in the new year).
I haven’t yet taken the time to sit down and reflect properly on everything that has been achieved this year or what I’m hoping to achieve in the new year and that is another reason why I’m planning to take the next week off. When I get back I will hopefully be able to outline better what it is I’m hoping to achieve in the next 12 months.
In regards to our 20 week no buy challenge, I don’t believe I’ll have any troubles with temptation as I’ll be focusing on my health and socialising for the next week or so but I’ll report on weeks 4 and 5 in the new year.
Merry Christmas and Happy New Year.
I hope you all manage to find at least something small to be grateful for and to bring joy to you holidays.
Yet again life got in the way and I didn’t get time to write my post today. I was meant to be writing about Quality but that will have to wait for tomorrow. Instead I’m going to do a very short post about an important event that’s happening in my life this week…
Photo (c) J. Sanderson, November 2011
Friday is our 4th wedding anniversary. Unfortunately my husband is going to be away on a work trip for the week but we’ll be celebrating when he returns later next week.
I can’t believe how quickly the last few years have flown by and I’m so thankful for all the love and support he has given me as we’ve learnt to live with my conditions.
It’s National Pain Week here in Australia and I’ve been doing my part to raise awareness.
Check out my story over at My Invisible Life, and my top 3 tips for living with chronic pain over at LiveKen.
It’s been a while since I’ve posted here and that’s for a couple of reasons:
1. As previously mentioned, I’ve transitioned most my blogging over to the LiveKen website.
2. I accidentally locked myself out of the site and had to get technical help to get back in here!
I’m still planning to do most of my blogging over at LiveKen, so if you haven’t already I encourage you to follow us there, but I’ll drop in here to do an occasional post.
The celebrations, though, started today and will continue until at least next Wednesday (a whole week of celebrations).
E is away at the moment and won’t be back until next Wednesday so I’ll be celebrating with him when he gets back.
Today I had afternoon tea with his parents and Amma and Uppa. We had a delicious cake and I was given some wonderful presents including homemade cookies and cake, a massage cushion for my office chair, a vintage leather satchel bag, home knitted cowls and some delicious teas.
Homemade Birthday Cake (Gluten and Dairy Free)
I haven’t taken photos of all the presents and I don’t really have the energy to now but I’m definitely very happy and grateful for all the love and kindness that has gone into making the first day of my birthday celebrations so great.
Each of these gifts takes into account my needs and values. I am grateful for the massage cushion, as I have definitely found using my mums to be helpful, the homemade and vintage gifts for their thoughtfulness and sustainable use of materials, and the teas because tea is always a good thing, especially in winter!
Today I also had a delicious lunch out with my brother and got my own TENS machine (I have to return my Physio’s one next week). This has made the day very long but full of special moments for me, I just need to remind myself I still need to pace myself through the rest of the week.
It’s also one of my best friend’s birthday today, so I dropped a present off at her house for her as well.
Tomorrow is my actual birthday and for some reason I decided that would be a great day to see how I go with coping with a day at “work”. I’ve registered to attend a networking event that I would normally attend as part of my job. It goes from 9.30 to 3.30, which means leaving home around 8.10 am to get the bus! I’ve lined up my brother to come pick me up if it turns out I can’t make it through the day but my plan is to try and pace myself while I’m out and see how I go.
I’ll be having dinner and spending the night at mums that night.
Saturday will be about celebrating with friends. My birthday present to myself was a ticket to go see Jane Goodall talk that morning at the zoo with one of my friends and then a few of us will be having a quiet celebration at one of their houses.
… Given all of that, I believe next week will be all about recovery!
I’ll still be here and will aim to share some more about the exciting new ventures planned for the next few months but I will be taking it slowly and playing it by ear a bit.
Thank you to each and everyone of you who has, and will, make the celebration of turning another year older one of happiness, love and kindness. When I look back over the last year, to where I was at this stage, I realise how far I’ve come. Last year I was only just beginning to realise what this illness meant for me, I hadn’t been diagnosed and I didn’t really understand that it was chronic. Today I’ve accepted my condition and I’m learning, in leaps and bounds, how to live a sustainable and fulfilling life WITH my illness. I am no longer fighting, instead I’m going along for the ride and seeing where life takes me.Until next week, have fun and enjoy life but don’t forget to look after yourself!
How do you celebrate your birthday?
How do you manage to pace yourself when there are several events on?
As you’ve probably noticed I’ve been a bit sporadic with my posting lately. I’m going to try and rectify that and aim for 2 posts a week, on a Tuesday and a Thursday.
Today I want to expand on one of my Top 5 things I’ve learnt in a year of Chronic Illness, having something you’re passionate about. Lately I’ve bee reading Keith Abraham’s It starts with Passion. This book is a self-help book focused on helping people to identify what they are passionate about and how they can make it happen.
I haven’t quite finished the book yet but I have really enjoyed the challenges and activities it contains to help you identify your passions. Since childhood I have been passionate about family, the environment, and learning new things. These passions are still high on my list today but I would also add that I’m passionate about helping others and making a difference in the world. When I’m doing something that I know is helping others and the environment, and that allows me to learn new things along the way as well I’m at my most happiest.
Me (in 2013) enjoying my work delivering sustainability information to the community at a garden open day.
Abraham suggests that to find your ‘Passion’ you need to identify what is meaningful to you. What emotions energise you and make you feel good about yourself? Why do you want to do something?If you know your reason WHY, and it’s linked to making you feel good about yourself, you are more likely to achieve your goals. What is that one thing that, whenever you do it, you feel great?
Setting Life Goals..
The first big challenge that Abraham sets is to write your life To-Do list, that is to create a list of 100 goalsyou would like to achieve. It doesn’t matter if you think you can do it now, what matters is to get it down on paper. I did this challenge on Monday. It took me most of the day to complete my list of 100 things I would like to see, do, experience or own, but I got there. My list includes things like starting a family (probably one of my longest held dreams), starting and running my own business, delivering workshops and presentations that help people live a better and more sustainable life, and travelling to various countries I’d like to visit. It also included things like being financially secure, learning new skills, and finding a work/life balance that enables me to live a fulfilling life even with my chronic illnesses.
GOAL #99: Eat vegetables with every meal
Some of the goals sound, at the moment, impossible to me (delivering a TEDs talk), others are very simple I just haven’t had the time or energy to actually complete them (writing a will and framing and displaying our wedding pictures), and others are things I am already doing but want to make sure they stay part of my daily routine (meditation, yoga, exercises).
Identifying the Why…
Once you have your list of 100 goals, the next step is to go back through them and think about how you would feel if you achieved them. What are your driving emotions? You will probably notice a pattern emerging in the emotions that you are identifying. Abraham states that the top 3 emotions that you find are your driving emotions, the ones that you want to feel every day. At this point you take those 3 driving emotions and define what they mean to you. For me, my driving emotions are Passionate, Grateful, and Accomplished. These are the feelings I want to feel on a daily basis. My definitions are: Passionate: I care deeply for my family, friends and others. My actions are in line with my beliefs and it’s obvious to others that they are important to me. My passion is infectious – others listen and understand the importance, my words and actions enourage others to share my passion. Grateful: I recognise how lucky I am to have everything I have. I celebrate my small achievements and take notice of all the wonder the world provides me with. My body is relaxed and healthy, and my relationships are strong. I am happy within myself and remain calm in the face of adversity. Accomplished: I know I am making a positive difference in my family and work life. My work matter, makes a difference and is important to me. I am creating a positive, passionate legacy that will benefit others even after I’m gone. I am able to take complex topics and simplify them so that others can understand and take action on them. Thanks to having completed this challenge, I am feeling more confident about taking action to follow my dreams. I’m working on a few big projects at the moment and I will share them when I’m able to. For now though it’s time for you to take some action… My challenge to you today is to write your own list of 100 Goals and to identify and define you’re driving emotions. Please feel free to share your results in the comment section.Also, please let me know if you’d like me to share my list of 100 Goals. If anyone wants me to I’ll type it up as a separate post.
Today is International ME/CFS/Fibromyalgia Awareness Day. As mentioned in Friday’s This is M.E. post, today I’m joining in with Sally’s #May12BlogBomb. I have decided to include the Pelvic Congestion Syndrome in today’s post as I don’t believe it has an awareness day of it’s own and it is part of my life.
To my constant companions – ME/CFS, Fibromyalgia and Pelvic Congestion Syndrome,
It’s now been over a year since the three of you decided to make yourself known in the most painful way I could imagine. At the time I didn’t know who you were or what your presence would mean to me and my life, but I’ve been learning a lot in the last 13 months.
Before you were here I had a very active, fulfilling life. I worked fulltime in a job I was finding exciting and meaningful, through it I felt I was actually making a difference to how people in the local community viewed and interacted with the environment. I was also a regular attender at my local gym and spent weekends being active with my husband, either hiking, walking or riding most weekends. My husband and I were planning a safari holiday to Africa, which would have been this November. I was going to go see the Gorillas in the wild.
But you’ve changed all of that! Between the three of you, you have taken away my ability to be active, to consistently think clearly and even to get the right words out of my mouth a lot of the time.
All three of you cause constant pain to my body. I am always aching and if I do too much, or eat the wrong thing that ache can turn into sharp stabbing pains or fierce burning. Most days I have to cope with at least one part of my body being numb with pins and needles.
I’m no longer able to lift heavy things or participate in any intense form of exercise for any length of time. In fact, I can only walk for 15 – 20 minutes at a time without the pain levels rising.
Since you came into my life I have been unable to work. Although my doctor believes I am now ready to return back to work part time (3 half days a week), I still struggle to do more than half an hour of any mental or physical activitybefore I need a break, and I definitely can’t drive long distances yet.
ME/CFS and Fibromyalgia, I believe you two are the cause of my incapacity to think and participate in mental activities for any length of time. The brain fog and extreme fatigue/exhaustion that you cause make it simply impossible for me to focus for any length of time. For a while there you took away my ability to read at all, but recently we seem to have come to a comprimise. As long as I don’t read for too long (less than half an hour at a time) I can now read, but I don’t always remember what I’ve read for very long afterwards.
Thanks to the medicines I’m on to try and allieviate your symptoms, I have constant nausea which interferes with my ability to eat properly. Some days I may be too nauseous to eat anything, others I may feel like I need to constantly eat to feel OK. Again, we seem to have come to a compromise, if I eat 6 smaller meals each dayyou keep the nausea and bloating to a minimum.
I know so far this letter has been a list of complaints, the negative things you have brought into my life, but I’m also thankful to you, my chronic illnesses. You have helped me view the world differently.
Thanks to you I’ve gotten back in touch with my spiritual/emotional side that has been supressed due to lack of time in my busy life before you came to visit. I have the time to do yoga (for 12 minutes) and meditate daily.
I’m able to see what is really important to me, my family and my ability to help others. You may have made it so that I’m incapable of doing what I previously did in my busy, active life but I have found other ways to connect and to help. Because of you I was able to write the story for the Foggy Frog and the Pain Gang picture book and associated campaign.
You have given me the experience and the time to develop new skills in writing, drawing, advocating and sewing.
I have learnt (or at least I’m learning) to pacemyself and use my energy wisely. I spend more time on looking after my health and caring for those around me than I previously did. Staying positive isn’t always easy but it is something I aim to do by remembering the good things I’m now able to do that I didn’t do before, and by remembering that nothing lasts forever.
My doctors don’t seem to know very much about you so this is a journey we’re taking together. Sometimes I feel very alone on this path but I remember you are always there and so is my family. I just need to remember to keep fighting for my rights and for the opportunities there are to minimise your impact on my life.
You may have stalled our plans to travel and to start a family, but no matter what happens I will fight for these plans. To me having a family of my own is one of the most important things that could happen to me. I am willing to go through a period of even more pain from you, Fibromyalgia and Pelvic Congestion Syndrome, if it means I have a child of my own to love and to care for. This is one dream that I will never give up on!
So, although you have brought me constant pain, extreme fatigue and brain fog (as well as many, many other symptoms that just confuse my doctors), I am grateful that you have come into my life. I have learnt so much from this experience so far, and will continue to learn as time goes on. I will find a way to live a reasonably active and fulfilling life again, even with the three of you here with me.
Thank you to my constant companions – ME/CFS, Fibromyalgia, and Pelvic Congestion Syndrome. You have made me strong.
This blog chain was set up by Louise from Get Up and Go Guru. Check out her original post here.
This Is M.E
Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS). This illness doesn’t even have one name that everyone can agree on, which is one of the many frustrating aspects of living with this multi-faceted illness.
I also suffer from Fibromyalgia and Pelvic Congestion Syndrome.
As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have joined in with the This is M.E. made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!
What is your name & how long have you had ME / CFS?
I’m Megan and I’ve had CFS/ME and Fibromyalgia for 13 months at differing levels of severity.
Where do you live? (Country, State, City – however detailed you want)
I live in South Australia, Australia. I’ve lived here my whole life.
Age (if you’re willing to share)
28
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I meditate at least once a day as part of my daily rest times. This has helped me come to terms with where I am and keeps me focused and relaxed.
2. I have watched all the M.A.S.H., QI, and Grand Designs (both UK and Australia) episodes that we have at home at least twice. Most afternoons are spent crashed on the couch with the tv on for company.
3. Although I’m not working at the moment I don’t get bored. My days are full of writing for this blog, drawing for the Foggy Frog and the Pain Gang picture book, meditating, exercising or attending appointments (doctors, physio, exercise physiologist, accupuncture and naturopath). I’d love to have some extra time to do more research into my conditions so I can better advocate for my health, but at the moment I’m using all my available energy.
4. My life is good. Even with the physical pain and complete and utter exhaustion I face every day, I’m happy and have found ways to fill my life and feel like I’m making a contribution.
5. I miss being able to catch up with my friends, but really appreciate the few close friends who visit or contact me regularly. A message or phone call every now and then is enough to make me feel happy and know that you still care.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1. No matter how healthy I look, the constant pain and fatigue I face means I’m very limited in what I can do without causing an increase in symptoms.
2. I don’t cope with large groups or activities that involve bright lights and loud noises. Within 5 minutes of being in these situations (including watching tv) my brain fog increases. Within 15 minutes my pain increases. This is why I often seem to not be paying attention or joining in the conversation. It’s also why I may decline or leave early. I’m not trying to be rude or avoid you.
3. With most activities I can only do 15 to 30 minutes before I need a break. I have regular 20-30 minute rests in the morning and a 1 hour or more sleep/rest mid-afternoon. If I don’t do this the pain and fatigue becomes unbearable. Usually after 3pm I’m completely out of it and I’m not the best company.
4. I have a disabled parking permit. Without this I would be struggling to go to my appointments and library or shopping outings. My husband does most of the shopping trips without me because they are just too much for me.
5. Even though I have these conditions and I’m in constant pain and exhaustion I still want to participate in all the activities I used to. Unfortunately I’m learning that this isn’t possible. I need to really consider what the possible side effects are before agreeing to an activity.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
This is a real condition with physical symptoms. It is hard to get a diagnosis and many doctors don’t even believe it is real. Several of the doctors I have seen have suggested that it is a form of depression. I accept that depression is also a real condition but I know for a fact I’m not depressed (psychologist has also agreed that), so please stop suggesting it! Treating ME/CFS as a psychological condition does not allow for treatment of some of the most prominent symptoms. Yes a lot of what is causing this illness is all in my head, but it is not all in my mind. Increasing exercise does not help and can actually be harmful for people with ME/CFS. We have to pace ourselves and live within our limits.
What is the most frustrating aspect for you of living with ME / CFS?
Not knowing if I will ever be healthy again and the impact of that on our life choices. As many of you know I’ve always wanted to be a mother. I still don’t know how any of these conditions react during pregnancy or beyond. I’ve read stories of people getting better with pregnancy and others where the pain and fatigue got worse. My husband wants me to be healthy before we even try for children but I’m scared I will never be 100% again and that this will mean we’ll never try to concieve. Even if I could convince him to try before I was 100%, I know that the pain from the Pelvic Congestion Syndrome will definitely increase and probably the pain from Fibromyalgia as well. I could be lucky and have remission from the ME/CFS during pregnancy but I can’t plan on it.
Anything else you’d like to say before finishing?
ME/CFS and Fibromyalgia have no known cures. Doctors don’t know what causes these conditions and some still argue that both of these aren’t real illnesses. As I said before, these conditions are real and real people are living with the impacts of them every day. We are not drug seekers (If it were up to me I wouldn’t take any at all, but I can’t do anything without them), we are in pain all the time. It can be hard to explain the symptoms because they are so varied and so different to what a normal person feels. I hope that by raising awareness we can help both the medical and the general community understand what these illnesses are like.
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Any other bloggers who want to join the blog chain, please copy this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a Tweet so she can link to your blog post in her original post.
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Looking forward to reading all your #ThisIsME posts. Use this hashtag on Twitter or Facebook to encourage more people to take part and to help people find #ThisIsME posts. And please let Louise know when your post is up and she’ll link to your page!!
Liveken - my chronic life journey 