Posts Tagged With: fybromyalgia

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

Looking for a geocache (on a good day)

Looking for a geocache (on a good day)

I was scrolling through the WordPress blogs that I follow and I stumbled across myjourneythroughme and her post about National Invisible Illness Week (Sept 9-15 2013), a list of 30 questions to answer about her invisible illness. These questions are the starting point that Lisa Copen (founder of Rest Ministries) used to create a meme (an idea passed from person to person within a culture [thank you Jess B & Wikipedia]) to help raise awareness of invisible illnesses (which vary greatly). Today I am feeling well enough to concentrate on filling out my own meme. So here goes …

 

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome.
2. I was diagnosed with it in the year: I am still awaiting a full diagnosis but have suffered on and off since 1990. I had a partial diagnosis in 1999 then relapsed in Dec 2011 and finally have a more solid idea of what is going. I am now waiting for the fatigue clinic appointment.
3. But I had symptoms since: I was 14 years old.
4. The biggest adjustment I’ve had to make is: Allowing my children to help me with everyday chores and letting my partner drive when I am tired.
5. Most people assume: There is nothing wrong with me, because I look fine. I don’t look tired, I can move well enough and I can be quite active.
6. The hardest part about mornings are: Trying to move when the alarm goes off. You would not believe how much concentration is needed to open your eyes. Then of course there is the standing up to get dressed, pins and needles in your feet & toes (most uncomfortable), and then there is the light-headed dizzy spells – walls are my best friend in the morning.
7. My favorite medical TV show is: I actually don’t watch TV. I would much rather be social networking or blogging.
8. A gadget I couldn’t live without is: Well that’s easy, my smartphone. I can do everything on there that I can do on my netbook.
9. The hardest part about nights are: If I didn’t have the Amitriptilyne then I would have to say going to sleep. My body could be dead to the world with not enough energy to even move – but my brain wakes up and won’t shut up.
10. Each day I take _17_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried relaxation/meditation but I need to be stricter on myself, I keep letting stress get in the way. I also use the blog as a form of “alternative treatment“.
12. If I had to choose between an invisible illness or visible I would choose: Invisible – there may still be a lot of stigma behind having an invisible illness but it is easier to hide behind the smile mask.
13. Regarding working and career: That is on hold at the moment. I discovered that I am unable to stay awake/alert enough to work as a teaching assistant. I even tried temping just a few days a week as a TA, but it hasn’t worked out as the fatigue is so unpredictable and I was letting schools down and even got sent home on a few occasions.
14. People would be surprised to know: I’m not sure about this one. People who know me know that I still enjoy walking & geocaching and that I like to push my illness to its limits with the occasional rock climb, abseil, kayak trip and camping.
15. The hardest thing to accept about my new reality has been: That there are days where I simply cannot do even the simplest of tasks without assistance.
16. Something I never thought I could do with my illness that I did was: Continue to enjoy some extreme sports. However I do need to rest for a few days before and I get no choice but to recover for several days afterwards.
17. The commercials about my illness: I live in England and as far as I am aware there are no commercials regarding CFS/ME and Fibromyalgia. However I have seen some IBS adverts and frankly they only deal with the mildest forms and are no help to me at all.
18. Something I really miss doing since I was diagnosed is: At the moment it is working.
19. It was really hard to have to give up: Work… Yes you read that right. I also had to give up being a Cub leader for a year and that was a really hard decision to make, and one that I am still making now. I don’t want to leave my Cubs, but I don’t know how much longer I can carry on leading them.
20. A new hobby I have taken up since my diagnosis is: Blogging & vegetable growing. The blog helps me to get the negative thoughts out of my head and make something positive from them. Who knows maybe someone has been helped from reading my woes.
21. If I could have one day of feeling normal again I would: Fit in all the visits that I owe friends and family. Sometimes I feel like I have become a recluse because I don’t go out to see people everyday.
22. My illness has taught me: Is still teaching me… to slow down, manage my time, accept help from others and enjoy each day as it comes because life is far too short.
23. Want to know a secret? One thing people say that gets under my skin is: “There can’t possibly be anything wrong with you! You look absolutely fine!” You know what love… I look fine because I force myself to look fine so that you don’t make silly comments like that!!!
24. But I love it when people: Treat me like they would anyone else, but deep down they know what is going on. Most of my friends can read the signs of my flares and know how and when to step in.
25. My favorite motto, scripture, quote that gets me through tough times is: Treat each day as if it is your last. Because life is too short and you never know when you will be unable to carry on doing your favourite things.
26. When someone is diagnosed I’d like to tell them: YOU ARE NOT ALONE.
27. Something that has surprised me about living with an illness is: How many people I have met that are also living with the same illness. We compare stories and strategies. It has been very helpful.
28. The nicest thing someone did for me when I wasn’t feeling well was: My fiance buys me little things, like gluten/wheat/dairy free chocolate.
29. I’m involved with Invisible Illness Week because: The stigmatism behind invisible illnesses needs to stop. We are NOT making this up – it is real.
30. The fact that you read this list makes me feel: Happy that my message is coming across and that you may have learned something new.

 

As some of you are aware, I have now moved the blog to www.geocachingwithgeokids.co.uk but felt it was important to post this here too.

Categories: Life goes on, My life, my journey | Tags: , , , , , , , , | 5 Comments

Pain, Insomnia & Relaxation

This week has been awful with regards to pain. I had read somewhere that humidity can be a bane for cfs/fibro sufferers, so whenever I notice that my pain levels are higher than normal I check the weather reports. Specifically the percentage of humidity to see if there is a pattern. Now I live in the UK, famously known for being wet and miserable, so basically this will be pretty much a battle that cannot be won. Anyway, Having checked the weather every day this week the humidity has been averaging 70-77%. It was at its peak of 77% on Wednesday (when I wrote the passages below).

Please just let me sleep!

Please just let me sleep!

“It’s gone 1am!  I’m still tossing and turning, trying to find a position that is comfortable. One where the burning throbbing sensation in my legs and ankles actually eases. A position where my left shoulder is not shaking & twitching, and the sudden shooting pain in my back goes away. Hoping for a few blissful moments where it doesn’t feel like a pair of clamps above both wrists and around both elbows are tightening every few seconds. It’s time to give me a break. My body has felt like this since I woke up at 8 yesterday morning. By mid afternoon I was so exhausted mentally from it all I gave in to myself and had a lay down & cry. Closed my eyes for an hour curled up beside Mark. He slept, I didn’t! I had to keep moving to get comfortable. We were holding hands but I had to let go because the pain in my knuckles made my fingers scream.
Tonight though, it’s the same again. This is the worst I’ve had! I’m so tired I should be able to sleep. It’s the first night in 18 months that I’ve not managed to fall asleep as my head hits the pillow. I finished the last of the Amitriptilyne tablets last week… I know that’s what helped me sleep because if I forgot to take it, it would take me longer to doze off. However it would leave me feeling very dopey the following morning. It was no longer managing the pain so my doctor has taken me off it and started me on Gabapentin. Trouble is the pain is getting more intense and seems to be everywhere, even in places I didn’t have pain before.

I see him again on  Monday, but already I feel like I can’t wait that long. I’m too tired to cope anymore. Earlier I walked from the bedroom to the bathroom in tears because I couldn’t put weight on my left foot – it felt like I had a bad knock on the ankle bone. It’s not felt like that since it was last in plaster (2010).
My body isn’t my own today, I don’t know who this person is. As far as I can make out there is no physical reason why I hurt this bad but there is no mental one either. It doesn’t make sense. It’s upsetting that I feel I let those I love down by not being able to even cook a meal, it makes me angry that my body is betraying me. Am I being punished? If so what for? I have no idea.

Tonight all I want to do is sleep. It’s incredibly lonely lying in the dark, trying to keep the crying quiet so as not to wake up Mark. Part of me wants to wake him so I’m not alone, so that he can comfort and soothe me, calm & relax me in the hope that sleep will soon come. But the part of me that loves him more than I could ever begin to describe wants him to sleep to remain blissfully unaware until we are reunited in daylight. He’ll tell me I was daft to suffer for hours on my own, but he looks too beautiful sleeping. So for now I just write all this nonsense to get it out of my head, as much as I can because even holding the phone is causing extreme pain in my forearms.”

Mark woke up in the end and we had a chat and a calming session (with tea) until about half 3 am. Mark understands the pain levels very well (he has back issues that have plagued him his entire life) especially when our British weather is damp and humid. So our chat did help me a lot, as this is all fairly new to me.

I also found a sleep app called Relax Time, similar to the Sleep Stream app that I used to use on my old phone to see if that helps me. I particularly like the alphawave, it lulls me into a relaxed state. The bonus is, Mark can’t hear it so it doesn’t disturb him. It did help, but last night I found it irritating so didn’t use it. But I shall keep trying it.

The pain had leveled off a little yesterday, but because I am still worse than I am used to I decided to try some other methods that I have been reading about. So before bed last night I ran a nice hot bath with about 10 drops of lavendar essential oil. While I was in the bath I used another app on the phone, Hypnosis – Free realxation 3.0, and used the progessive muscle session. Seeing as I have been too unwell to exercise this week I thought that I should try some gentle muscle exercises. This felt great! Especially with a deep hot bath. Afterwards I felt relaxed and the pain had eased off (for about an hour or so). I did sleep better last night.

This morning, I decided to do the progressive muscle exercise again before getting dressed. This time laying flat on the bed. Again I felt more relaxed than I have all week, but the gentle exercise which is only about 15 minutes long did leave me feeling very fatigued. So I had to lay quietly with my eyes closed and breathing gently for about half an hour before I was able to function again.

I am going to keep trying this out though, especially when I am in so much all over pain and can’t bare the thought of taking a walk. It will be interesting to see how and if it works. In the meantime I will be back at the doctor’s on Monday to continue discussing pain management as 300mg of Gabapentin a day is most defintiely not working, and my emotional state has become very fragile again. I also feel the need to speak with a nutritionalist or dietician. Since finding out about the IBS I have discovered that my worst triggers are Sunflower and Vegetable Oil. This is not a good thing as we are finding that almost every food product has one or both of these products and I really do need some guidance.

Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , , , , , | 2 Comments

Chronic illness resembles an onion

Chronic pain & extreme fatigue is like an onion. It has many layers. One of those layers is unstable emotions.

I'm going out of my mind!

I’m going out of my mind!

Life throws us many challenges which we have to learn to deal with in many ways. It could be learning from repeated mistakes. It could be teaching us how to cope with a variety of different situations. But no matter what it is there are times when you feel that you just don’t have the mental or physical energy to even bother.

My doctor encourages me to write this blog as a means of getting all my fears, thoughts (both negative and positive), dreams, hopes and aspirations out of my head rather than sitting quietly stewing over everything that niggles and eats away in my mind.

You see when I don’t write it all down, my brain goes 19 to the dozen, at night lying in bed waiting for sleep to take me. Then when I do eventually drop off my subconscious takes over and more often than not it will still be mulling over every last thought I’ve had that day; week; month or even year. Leaving me totally exhausted and unrested eight to ten hours later!

Now the important thing about the whole experience of writing down my highs and lows is that I do tend to write when something really is bothering me. But it gets saved as a draft for me to look at the following day. Once I’ve had a chance to calm down (again positive and negative) I’ll spend a good few hours reading through my thoughts. Carefully changing and editing as I go. Some I keep and some I delete never to be seen again. Some of my post ideas get thought about and written over several days, none are ever spur of the moment (more haste, less speed!). All in the name of warding off depression (or so my gp tells me).

How I feel when my brain explodes!

How I feel when my brain explodes!

And it works. It really does. Talking out loud about how different scenarios affect me in different ways. Discussing aloud how I analyse a situation helps me to understand myself better and helps me with learning new ways to interact with people. By writing it down and then re-reading it many hours later helps me to clear my mind, and to learn what a particular feeling or emotion, activity or situation does to me on a variety of levels. It really is a valuable tool to some partial type of recovery. I certainly don’t want to be a person that keeps everything inside, quiet and festering until I can take it no longer and explode like a firework. Can you just imagine the damage that could cause? I don’t want to imagine it. (That just caused me to lose my train of thought completely!)

I guess what I’m trying to say is that this is me, you can read into me as much as you want to, but what you see is what you get. My words may hurt someone, my words may help someone, they do both to me you know. Many times I’ve sat and cried reading my words back to myself before publishing a post. I suppose that’s why a regular blog session spans about four hours.

I am emotional, I am physically and mentally exhausted all the time. Little things like not being able to lift a kettle or going in to the dishwasher for a pint of milk, or shooing the pup off the vegetable plot for another time do fill my eyes with tears and gives me a heavy heart. I can’t help that immediate response but what I can do is write about it and analyse it to understand why it happened, why I felt the way I did when it happened, how I can learn from that or prevent that effect (negative) from happening again or how to recreate an effect (positive) when I need to.

So yes, I write and I share for the whole world to see (well the odd few of you who like to check in from time to time) but I do it for me and my mental wellbeing, I do it to clear my mind so I can concentrate on the important things like what my children have been up to this week.

Clearing my mind

Clearing my mind

Related Posts
For other post about chronic fatigue and chronic pain, and how it affects my life, why not take a browse through the category My life, my journey…
Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , | Leave a comment

Garden Life

Trying to enjoy my garden

See, I told you it was a mess!

See, I told you it was a mess!

I will be the first to admit that my garden is a mess. It needs a lot of work and tender loving care. A project that I am planning on undertaking even though I am struggling to find a sensible work/life balance with the pain and exhaustion. At the moment I am still building up the Gabapentin levels and still tending to over do activities.

I read a great post over the weekend by desdemonad, writer of The Wind blows all over about pacing yourself. Some really great points were made about doing certain tasks for 10 minutes followed by a rest period of 15 minutes. I like this idea and it has great potential to work well, but only if I am hard on myself.

On Sunday I did three half hour stints in the garden in a bid to clear it of mess, rubbish and items that I no longer require. On Monday I only managed twenty minutes of filling rubbish sacks before succumbing to the tiredness and aches. Unfortunately I made the mistake of leaving the sacks in the garden and our lovely and not so little puppy has had a good rummage, so in that respect I would say I need to repeat work that has already been done.

In my last post, a usable garden! I mentioned the fact that I am on a journey to reclaim the

A boot full of goodies

A boot full of goodies

space for vegetable growing. Unfortunately for me though, the soil is currently so compacted and dry I know that I need assistance with that particular task (the girls are definitely not interested in turning soil). I am no longer strong enough to wield a garden fork! So despite the fact the garden is my project I have had to draft in my not-so-willing step-son. However my brain is trying to tell me “you can do it, it’s not that hard”, hence why I am distracting myself with the blog instead in the sunshine. (Yay, sun & heat in England today!)

Oops I went a little off topic there. Anyway, as a result of the small amount of activity I have spent the last 48 hours trying to recover (I used to be able to spend an entire day working in the garden). During that time my Mum had been on her weekly shopping trip with her parents (both in their mid to late 80s) and was sending me random messages telling me the things she had got for my project, to give me a bit of a head start. I went from resting to almost bouncing off the walls with excitement (well as much as my body allowed) and promptly got in the car and headed over for coffee and collection.

Hen proof cloche! Home to pepper and tomato plants.

Hen proof cloche! Home to pepper and tomato plants.

Needless to say the pacing strategy was thrown out the window when I returned home. I mean, I had a variety of new plants and seeds that needed re-potting and sowing before the pup got to them. So once the youngest was home from school we spent almost two hours in the garden pretending to be gardeners and building cloches and so far with much success. The downside though was last night I was so tired I didn’t want to have “date night” and was resting in bed by 20:00. I also forgot to eat so it was almost 22:00 before I got any food inside me, not a sensible thing to do as I had a very restless night, waking to move several times followed by the discomfort of heartburn (I still haven’t got the hang of IBS). And today it has taken me four hours to become functional enough to think.

So today I am kind of resting; in the garden with the net-book talking to you and planning my next moves for my 40 ft square barren wasteland. Enjoying the sounds of my hens in their new surroundings, the songs of the wild life and the mischievous noises of a puppy trying to see how much she can get away with.

Carrots, broccoli, courgette, chard, cabbage and sweetcorn (which looks like it grew over night)

Carrots, broccoli, courgette, chard, cabbage and sweetcorn (which looks like it grew over night)

Related Posts

For other post about chronic fatigue and chronic pain, and how it affects my life, why not take a browse through the category My life, my journey…
Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , | 5 Comments

A usable garden!!

Our hens in 2009

Our hens in 2009

For a long while now I have been wanting to have a lifestyle of self sufficiency, or at the very least going back to the old ways of growing my own produce.

I moved into my home back in the summer of 2009 with grand idea’s to grow our own vegetables. But just after starting out I bought four chickens. I couldn’t see the problem of letting them have full access to the garden, after all they were giving me four large eggs every day.

I love my hens, they are very funny to watch wandering around the back yard investigating every little thing that moves. Digging worms up from the soil and eating everything in sight.

And I mean everything. We were attempting to grow swiss chard, onions, lettuce, peppers, tomatoes, chilli peppers and herbs as well as flowers to make the garden look beautiful. I had planted out daffodils, purple heather, primroses, tended the existing bushes and trees (no idea what they were) and my garden looked nice. It was a real pleasure to get out there in the summer months. This first attempt at becoming a gardener didn’t last too long. The hens managed to eat everything except the rosemary! They even found a way to get into the cloche that I was using to protect the onion beds, twice! The second time they managed to rip through the seams and completely destroy the cloche. Bang went that idea.

The hens have eaten everything.

The hens have eaten everything.

In 2011 I bought more hens and had a new run built with the idea that the girls would become enclosed and I could begin reclaiming the garden again. The new hens didn’t get on too well with my older ones so a new coop plus run was bought for them and my existing girls were still having full run of the garden and only enclosed when I had friends over for barbecues. I certainly am doing this wrong!

Then last year (2012) my garden basically got ignored thanks to my entire body “crashing” leaving me too tired and achy to do much at all. I didn’t give a minutes thought to growing produce, but the entire time I knew that I wanted the hens to have a bigger living space.

Garden shed coop

Garden shed coop

And this brings us up to the present, well almost! A couple of months ago I gave my step-son the task of creating a usable living/sleeping/nesting space for the hens, in the garden shed. Utilising the existing coops and runs to save money, he kitted out the inside of the shed with a shelved area for food and water, used the old rabbit hutch/coop to create a nesting area, built two ramps for both, then installed perch area’s for them. They love it, we open the shed door every morning and they take themselves off to bed at dusk. Still having full run of the garden.

Then Misty joined the family. She loves to play with the chickens whenever she goes into the garden. We have spent the last two months “rescuing” Millie (our eldest & most productive hen). Now is the time to build them an enclosed run attached to the shed so that they are safe from Misty and the local foxes. Again my step-son was given the task of using the left overs from the old runs to create a new run with a sliding hatch to let the hens in and out, while still being able to access the shed via the existing door. This he has done very well.

So now I can begin to think about reclaiming the garden and becoming self sufficient! This is all very well; I went out to make a start earlier today as I am feeling quite bright and able. I stood in the middle of the garden, turning circles, looking at the mess around me. My head exploding with idea’s on what I want and where. I stood there for five minutes, totally dismayed and began feeling exhausted by the task ahead.

20130602_151951

Where do I start?

So I went indoors, had a coffee and a rest. Still with idea’s reeling in my head, making me restless. I really don’t like feeling restless, my body constantly moving, my brain itching to get up and do stuff. An hour later I went back outside, thinking that I could clear all the old branches from the trees that we chopped down last autumn and then re-arranging the greenhouse, some metal racking and all the stuff that used to be in the shed before the chickens moved in. Effectively clearing the entire garden to make way for my grand ideas of growing potatoes, carrots, peas, broccoli, tomatoes, sweetcorn and anything else that takes my fancy.

This didn’t happen! Less than two hours later I was hiding away in my sanctuary almost in tears, because I knew that this was going to take me a very long time on my own. It finally occurred to me as I swept the decking with both legs and both arms shaking that this invisible illness really does get in the way of achieving realistic goals.

After calming down and composing myself again (and another cup of coffee) I went back out to the garden, resigned to the fact that I certainly won’t be clearing it all today. So I concentrated on just sorting one corner of the decking and carrying on with the other mammoth tasks another day, when I don’t feel quite so fragile.

The start of a usable garden

The start of a usable garden

Related Posts
Take a look at the category My life, my journey… for other articles about chronic fatigue and chronic pain.
Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , | 6 Comments

“Caving” to protect loved ones

“Caving” to protect loved ones

This week is half term, a week where I should be able to enjoy spending quality time with my children. A week where most people have gone on a short break with their families or out enjoying day trips to the coast, a theme park or walking through the tantalizing British countryside.

Not so for me. My children have been very good at finding things to entertain themselves, such as inviting a group of friends over for a sleep over, or the boyfriend to watch movies, creating new polymer sculptures, playing computer games and the like…

While I rest & recover. Last weekends activities took more out of me than I care to admit to my family. In all reality it was just a regular weekend, a nice casual stroll around Canterbury on Saturday, followed by a family celebration on Sunday. We had a rest day on Monday followed by dinner with my Mum.

Then Tuesday came along. This ended up being quite a busy day. I was already in more pain than usual from the previous days but still needed to do a run to the dentist and then another run into town. On my way back I realised that driving is becoming increasingly difficult. The pain in my elbows is making gear changes and steering far more challenging than I ever expected. But I tapped into that last little bit of energy reserve to get the jobs done.

But on Wednesday, I caved! I went into my little shell, hiding my pain, hiding my emotions, hiding my fears, my hopes, and my dreams. My new medication is yet to start working for me. Okay, it has only been a week and I do understand that the Gabapentin needs to build up slowly in the system…

But I am so very tired now, and in more pain, new pain. My arms and legs feel like the bones are being crushed from the inside out. The muscles feel strained and sore, as if I have been lifting weights or taking part in a long marathon or bike ride. As much as I love my partner and my children, my entire body feels bruised and I am even finding hugs painful (but I won’t stop hugging).

The waves of crushing pain led to nausea, followed by my brain running through all my fears. Real fears; How do I earn money when pain makes me so tired that I can’t concentrate on anything? How can I carry on showing my family how much I love them? How do I tell them that I am frightened that we will lose everything? All because the pain leaves me feeling unable to do anything.

I no longer feel guilty about not being able to do everything and have forgiven myself for thinking that I have caused this (a thought that I had for a long time), but I have now reached that point of what next? I am currently signed off sick, but with the last 18 months of unreliable work attendance due to this debilitating illness I am not sure if I will find a permanent placement when we get the medication right. This leads to my biggest fear and the one that I hide the most, Will we lose our home?

I have been trying to find new ways to work from home, work that I can do around the illness like the proof reading, but this is slow and irregular at the moment. So I am in a vicious circle of fear, pain, trepidation and fatigue. I am just thankful that full on depression hasn’t hit me yet and that in amongst all the pain I can and do find things that make me truly happy even if I am unable to do them every day.

But, yet I still find that I “cave”, my coping mechanism to protect my family. This I need to work through – this blog is helping!

Related Posts
Living with an invisible illness
Coping with everyday chores
Hiding behind “everything is okay”
A mile a day keeps the pain at bay
Emotional Overload
Status Update
Categories: Life goes on, My life, my journey | Tags: , , , , , , | 7 Comments

Status Update

Rather than write several articles today spamming your feeds and inbox I have opted for one to cover all. Not sure if this will work out, but definitely worth a try, don’t you think?

My life, my journey…

It has been an incredibly long couple of weeks since I last posted about my debilitating lack of energy and pain. My last post focused on the emotional overloads that are caused by extreme pain followed by fatigue followed by more pain.

During the last month I have kept a pain diary to show my GP. I had my appointment with him last week. Anyway, he signed me off work for another month and after having read my pain diary decided that he would chase up my referral for the fatigue clinic (he is now more convinced that I have been struggling with CFS and Fibromyalgia for a long time). It has been three months and I haven’t yet heard from them.

We spoke about medication again. I have been taking Amitriptyline since December 2011 with increasing dosage but for the last six weeks it has not helped me in the slightest. Unless of course you include the fact that it leaves me so doped that my family struggle to wake me in the morning. For pain management though, it has stopped working and I have been living on maximum doses of paracetamol and ibuprofen since I last saw the doctor. So this week sees me lowering the Amitriptyline dose to nil and starting on Gabapentin, slowly increasing to 300 mg a day. After just 7 days I have been able to take less ibuprofen, but I hit the emotional black wall again yesterday.

Silly little things that shouldn’t have bothered me at all became huge deals, and I took every little hint/error/dig as a personal jibe. Which meant that I seriously lacked enjoyment on a special day which then had the knock on effect of making my immediate family miserable too. I knew that all this was totally illogical and once I had found the time to calm down I then began to mentally beat myself up over my behaviour. Needless to say I didn’t get much sleep last night because my brain just would not shut down.

Because I am signed off work I have applied for Employment Support Allowance (ESA), well what a joke that is! They seem to think a person can live on 50p a week! It isn’t worth applying for. On top of that I have had to also complete a questionnaire for Atos, they are the ones who decided whether you should be entitled to support. At the moment they are the laughing stock of the country and have successfully upset a whole lot of people. After three hours of form filling I was about ready to drop. Drop into the nearest hole in the ground and disappear forever! That was only four days ago, I’m starting to feel more positive again.

The Freelance Life

This has been a slow start for me, but is now starting to look up. I have been in discussions with two companies about proofreading/editing services, one for a magazine and one for an outdoor supplies website.

This weekend saw my first job come in and I am very excited about working with them (top secret for now I am afraid). However, we have found through our first experience working together that there is a lot of scope for improving time efficiency and financial viability (due to the lack of computer software at my finger tips.) A task that I have been attempting to rectify this morning in advance of the next issue.

A big plus working on this project has been the ability to communicate swiftly and cheaply thanks to the wonderful invention of social networking sites and smart phones. Instant messaging has been a godsend this weekend.

Another thing I discovered was that I was able to work on and off throughout the day, giving my body time to recover before the next onslaught. A much better process for working, rather than an employed job having to work six hours straight with a 30 minute lunch break. Looking back through my notes on the project I found that I was able to handle about an hour at a time, then a break, then back for an hour. This helped me to keep the pain and stress levels lower than they would have been if I had ensured that I stuck with a structured work regime.

For more details on proofreading services, view my page.

Luminesence76

It would seem that our decision to create a Facebook page for our Etsy online store was a great idea. Within the first week alone Freya has received five custom orders via Facebook and we have seen the page being shared with friends of friends. It is yet to begin generating further business on Etsy though. But time will prevail, I have faith in Freya’s small project.

For more details on the products available click on the Etsy link below or go straight to our Facebook page for some exclusive items.

Categories: Life goes on, My life, my journey, The Freelance Life, Wolfiesworks | Tags: , , , , , , , , , , , | 1 Comment

Flowering Tea

Today I feel so tired. Tired of the aches, tired of the throbbing, tired of the nagging headache and tired of the pins & needles in my right arm and hand. So tired I just want to curl up in some warm comfy covers and sleep.

But today I didn’t do this. Today, I dosed up on pain killers and met a friend in town for coffee and a chat. A great chat about all sorts of things from software programming to geocaching. Despite pain & exhaustion I knew I needed to get out and to be “normal”.

If I hadn’t accepted my friends offer of caffeine and company then we would never have discovered Flora Tea. I have never seen anything like it. Green tea encompassed in a “heart” with dried flowers which open up and bloom when boiling water is poured on. It was simply magical.

image

Categories: Life goes on | Tags: , , , , , | 2 Comments

Emotional Overload

Spread the word

Spread the word

Emotional overload

Oh my word! Last night saw a mass emotional burn out from me. I’ve been doing so well this week too. Mentally I have been on a high, physically though I don’t think I have ever been in as much pain.

Saturday started out like any other, the girls were at their Dad’s and the home was quiet and peaceful. Mark and I took Misty for a lovely walk out on the nearby marshes (less than a mile, I actually listened to my body) collecting some new geocaches along the way. Followed by a relaxed afternoon and generally didn’t do much at all.

Then this evening a normal conversation between Mark & his son sparked some really illogical reasoning in my head. I began to feel very guilty that I wasn’t doing right by my girls, that I wasn’t providing for them. That I was letting them down by not working and having to rely on them and Mark to help me out around the home. But at the same time I was telling myself to stop being ridiculous, I haven’t chosen to be unwell and that I am doing everything I can for my babies.

This all quickly transpired into a big wet snotty mess and I then felt like it was all total chaos and completely out of my control.

As I sat discussing the myriad of illogical emotions with Mark and my eldest I began to calm & relax. We sat in my sanctuary (our bedroom, it is the calmest, warmest and most comfortable place in the house) talking and crying for over an hour. The tiredness swept over me and the screaming pain increased. Just letting go of all my pent up thoughts, illogical as they all were, wiped me out totally and I spent the rest of the evening curled up among my pillows, chilling out.

Emotionally I do feel better, it’s so nice to actually let it all out with those I love rather than protect them from my hidden demons. I just feel a little gutted that I missed out on a mid-year Christmas barbeque with our geocaching family, but I do recognise that this is what I needed to do for my own sanity.

Oh and by the way, today is Fibromyalgia Awareness day (so glad I didn’t hit the publish button last night) so please spread the word. Not enough is known about this illness and it is still a hard battle trying to get it recognised as an illness. Believe me I know! The general attitude is “if you can’t see it then it’s obviously not there”.

Photo credit to Fibro Colours
Related Posts
Living with an invisible illness
Coping with everyday chores
Hiding behind “everything is okay”
A mile a day keeps the pain at bay
Categories: Life goes on, My life, my journey | Tags: , , , , | 2 Comments

Coping with everyday chores

Coping with everyday chores

The image in my head!

The image in my head!

I don’t know what it is like for everyone else, but in the past I have had the tendency to leave all the household chores for one day of the week, whilst working the other 5 and only having one day for rest. This has been very true for the decade in between the two bouts of extreme fatigue. I have watched friends and family running round like headless chickens attempting to keep their homes pristine clean and presentable for visitors. I too have tried this method of managing home and children, only to realise that this particular mode of “keeping house” does not work for me.

In my head I have an old fashioned vision of what a Mum and housewife should be like. Up before the children, dressed & presentable, serving breakfast, making lunches. When all have left the home for the day I would be working my way through the house, cleaning and vacuuming, collecting the washing and hanging it on the line. Preparing the evening meal so that it is served up with no waiting for the children and husband. This process is then repeated the next day, and so on throughout the week.

But in reality life is very different…

You see I am having to retrain my thinking and ideology of how I am supposed to behave. This is because I tire very quickly and am often in pain from head to toe, which gets worse with any kind of activity. I am learning how to pace myself and constantly reminding myself that it is okay to rest between activities. I even find I have to rest after writing blog entries! (Even thinking and concentration is a tiring activity.)

So what works for me?

Everyone is different, even other sufferers of chronic fatigue/fibromyalgia (and a variety of other illnesses that leave you drained of all resources) have varying ways of coping with everyday activities.

For me I have begun to spread out the household chores between other family members. The girls aren’t particularly keen on this, but they are coming round to the idea now. I have to rely on Mark to help too with shopping, driving, carrying and cleaning. I try hard to not let work build up over the week by doing a load of washing every other day. We take it in turns to sort out the family meals and be responsible for all the pets.

This works well… until I begin to feel guilty, as though I am taking advantage of everyone in the house. That is on days when I feel good, almost invincible compared to all the other days in between. Then I go overboard by doing everything. Mad cleaning spree’s, a weeks worth of washing (quite often 5 or more loads), cooking, vacuuming, obsessive compulsive tidying in a bid to make the home spic and span. Proving to myself there is nothing wrong with me and that I need to buck my idea’s up and get on with life.

…and back to square one!

After a sleep of 10 to 12 hours, I then wake up feeling worse than before. Completely unrested, tired & weak, aching as though I was in a car wreck and regretting that I tried to do everything all in one go.

I am slowly beginning to listen to my body more, accepting that I am not as capable as Mrs Jones next door and trying out new routines which are more beneficial to me. It is a long and slow learning curve, not just for me but also for those I love dearly. Because no two days are the same; one day I may cope well with doing one household chore but the next I could be struggling to lift the kettle.

So pace is the key

Don’t over do it! I’m no good to anyone if I push my boundaries too far. I refuse to have complete bed rest as a form of recovery. I have seen this first hand and personally I don’t think I could cope with the outcome of being even less capable than I am now.

I have been advised that I must walk at least a mile every day (for other sufferer’s you know how hard that can be), but some days I swap that walk with one of the household chores, just so I feel like I am being responsible for my family. One activity per day!

I have been in remission before, through pacing myself, so who knows maybe I will go into remission again some day. Light at the end of the tunnel, perhaps? But for now I will take each day as it comes, assess how I feel and listen to my body instead of just assuming that I can do it because that’s what I am supposed to do.

If anyone else has other suggestions on how to cope with chronic pain and fatigue then please don’t be shy and make a comment below. I am truly interested on how other’s deal daily with their “hidden illness”, because your way may work for me too.
Related Posts
Living with an invisible illness…
Hiding behind “everything is okay”
A mile a day keeps the pain at bay
Emotional overload
Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , , , , | 7 Comments

Blog at WordPress.com.

%d bloggers like this: