The Spoon Theory and me.

I first got to hear about the spoon theory 5 years ago, in fact I did a little blog about it here.  The video shows a lady who suffers from Lupus (another autoimmune condition very similar to rheumatoid arthritis).  I do not suffer from the nausea and temperature problems that she discusses but do most of the other things.  If you have time to watch the video then it will really help put the following paragraphs into context.

After a recent very serious and prolonged flare up of my rheumatoid arthritis I have decided to see how many spoons I generally have on a 'normal' day, so here goes......

1. Wake up in my own time, go to the loo, get dressed = 1 spoon
2. Go down stairs = 1 spoon
3. make breakfast and cup of tea = 1 spoon
4. brush teeth and hair, wash face = 1 spoon
5. catch up on paperwork/emails = 1 spoon
6. make and eat lunch = 1 spoon
7. go for a swim, shower and get dressed = 3 spoons
8. make tea for the family = 2 spoons
9. go upstairs and get into bed = 1 spoon 

So there you go my basic day also has about 12 spoons in it.  At the moment the only way I can do other activities is by swapping it with another, for example, when my husband is home, he will make my breakfast, lunch and often tea - that gives me a whole 4 spoons to use on other activities.  Here are some of the other things that I like to do:

1. Drive to church, stay sitting in an upright chair and drive home= 3 spoons.
2. Sit and crochet for a couple of hours (only possible when hands are not to sore) = 1 spoon.
3. Water my garden = 1 spoon
4. Walk my dog = 2 spoons
5. drive to a friends for a coffee = 2 spoons
6. go shopping for an hour = 3 spoons
7. drive to the beach for a few hours with a sea swim = 4 spoons.
8. have a friend round for coffee = 1 spoon
9. do some sewing with my machine = 2 spoons

So to do any of these at the moment, I have to not do some of things in that first list of 9 activities.  And I'm afraid it doesn't end there, life is messy and so there are other things that come in and demand spoons from me........

1. An unexpected emotional telephone conversation = 2 spoons.
2. Tackling the ironing mountain = 3 spoons.
3.  An extra car journey to take something to school for one of the children if they have forgotten something = 1 spoon.
4. Parents evenings at school = 3 spoons.
5. doctor/hospital appointments for me or the children = 2 spoons
6. A trip to the shops for something for tea = 1 spoon
7. Taking/ fetching the children from after school activities = 1 spoon for each journey.
8. Bumping into a friend whist out and standing chatting for 10 minutes = 1 spoon.
9. Getting petrol for the car = 1 spoon

Now the thing about that third list is that any of these always have to take priority over the second list, and problems really occur when I have got to do all the things in the first list and then some of things in the third list.  This will inevitably mean that I end up borrowing spoons from other days which means it is highly likely that I will end up extra fatigued, which makes me vulnerable to become ill or have another flare up.

On top of having to think about all these lists all the time, in order to be able to get done the things that need to get done in a day (and sometimes the things I WANT to do in a day), I also have to acknowledge that there is a spoon thief out there.  My thief comes in the guise of fatigue,illness and flare ups.  Like a thief, I never really know when they are going to strike.  Sometimes as I mentioned before I leave a window open by doing too much, which allows the thief easy access to my spoons.  So what do I do when the thief strikes?

If my husband is at work it means not doing some of the things in list one, so I might not get dressed or go downstairs, this is okay as long as one of my children is happy to bring me a cup of tea and maybe a bit of breakfast.  Phone calls and emails have to wait.  The children may have to make their own tea if dad is at work.  The one activity that I will try all out to do is my swimming as the benefit to my joints of moving them in water is proven to be positive.  However I have to be content not to even swim if I'm bad and just move in the water, have a quick shower and not dry my hair.

On the whole I seem to get through my days okay.  I am however human and I do sometimes feel sorry for myself.  This happened to me yesterday when I went to church and heard all about the holiday club that had been on for children - just 3 years ago this was part of my job.  Now even just getting to the service was an effort.  I know that I shouldn't look back and compare then to now, but sometimes you just can't help it, it just suddenly slaps you in the face.  I nearly didn't go to church because I knew it might make me sad, but then I feel bad and selfish for not supporting the great work that is going on.

In a world where everyone seems to be defined by who they are and what they do for a living it can be very difficult to continually have to make an excuse for not fitting into that definition.  Not that I think the definition is correct, but going against the grain is difficult at the best of times!!!

So there you go, you now know a little more about what goes on in my head.  It's a good job God blessed me with a reasonably organised nature otherwise I don't know how I would manage!

Take care for now,    Jane x.

What a difference a week makes.

I can't quite believe that I was writing such a happy up beat post this time last week!  After writing that the following day I woke up with very sore joints,  this happens some times with my rheumatoid arthritis, but often wears off over the day.  However Weds it was still just as bad, so was Thursday and Friday - grrrrrr.  It is so easy to be pulled down by pain.  I suddenly become aware of all the things I cannot do, rather than thinking about the things I can do.

It took me until yesterday to put a plea out for prayers from my friends for healing and today I think God has answered in a gentle way.  The first thing is I managed to have a telephone conversation with my GP and so now have some stronger pain killers - which are already working better than my other ones!  The second thing was that because I had to go to the chemist to pick up my prescription, I had to use the car, which spurred me on to drive just a little further to the gym and go for a swim.  I had to use the indoor pool because it is the only one with gentle steps down into the water rather than a ladder.  However it really was bliss.  I guess I was more floating than swimming.  When I am floating my arms feel so supported and weightless, I so wish I could bottle that feeling it is just bliss.  It reminds me of years ago using a floatation tank, where you get into a coffin like piece of equipment that has salty water in it and you lie in the darkness.  They were all the rage back then, I wonder if they still exist.  Anyway the pool is definitely as good a place as any to capture that beautiful floating feeling.

The bonus of getting to the gym means I could shower as well, at home I have to go upstairs to do this, so when everything is as painful as it is now, I can only shower either first thing in the morning or last thing before bed.  The gym is great as I am able to stay all on the ground floor all the way from my car.  So though I cannot say there has been a lot of physical healing take place since the prayers of yesterday, I do know that God is here with me and am very grateful for the moments of relief, medication and water have given me.

Have a good week xxxxxxxxxxxx

Just to Tired.

                                                 picture from goggle images.

 
Have you ever been so tired that the longing of getting into bed consumes all your thoughts?

I have been having problems sleeping for many years now.  Sometimes it has been because my head has been full of emotional turmoil.  Most of the time it is because of my rheumatoid arthritis.  You see when I get into bed there is nothing to take my mind off what is happening with my body (unless there is emotional instability about other stuff!).

At the moment I am having to rely on medication to get me to sleep.  The only other solution that works is alcohol, though this sleep is usually very short lived!  The only problem with taking medication is it seems to do something to my dream life.  I wake up and cannot remember what has really happened and what was dream.  Occasionally the dreams are very disturbing, like the other night when I was living in some sort of slum being lorded over by bandits who were raping all the young girls!  Then other nights I can be convinced that my daughter and the dog have visited me in the night and have to take my husbands word for it that they didn't.

Whether it is just a culmination of lack of good quality sleep or something else, since lunch time yesterday sleep is all I want to do.  I went to bed about 7 after taking some meds. Apart from a couple of short wake ups I slept 'well'.  However today, just tidying up one small cupboard this morning has zapped all energy from me once again.  I gave in at 12.30pm and went to bed.  My lovely husband came and woke me at 2.30 and by 3 I managed to drag my self out of bed.  All I have managed to do since then is have something to eat and watch crappy tv.  All I want to do is go back to bed. 

In the past I have never been the sort of person that can sleep during the day.  I need to take medication to get me to sleep at night (even when I haven't slept during the day), then have problems waking up in the morning.  During the day I can just get into bed and go straight off.  None of this makes any sense.

I am sitting here thinking I could do a bit of crochet, or knitting - but the thoughts are fleeting, what I really want to do is go back to bed.  I need a bath or a shower, but I know if I do one of these, the chances of me not going straight to bed afterwards are very very slim.

The problem with me being tired is not really my problem.  I could quite happily just go and get into bed again.  But how do you explain to your children (even teenage and almost teenage) that the amount of sleep you have at night time is just not enough.  How can I stop my lovely hubby from worrying that there isn't something terribly wrong with me which is making me sleepy.

I do wish I had an on/off button with a recharge capacity.  These laptops and other whizzy devices don't know how lucky they are!

Starting as I mean to go on.

Happy New Year faithful followers!  And faith full you are indeed if you are still following me - only 25 posts last year and most of those were of me moaning!!!!!!!!!!!!!!!!

I cannot promise to be moan free this year - but I will try and keep it to a minimum.  A dear friend posted the above picture on facebook today and it got me thinking........

1.  Make Peace with your past  so it won't disturb your present.

I have been doing a lot of this over the last 12 months with the help of a very patient therapist and family.  It is very easy to make flippant comments to people about letting go of the past, or letting bygones be bygones.  However none of these are helpful if you haven't come to terms and made peace with your past.  It doesn't mean you have to not care about the past, it doesn't mean your past becomes unimportant.  Your past is goes with you as you travel through life and if you don't make peace with this travelling companion then it is going to be a very uncomfortable ride.

2. What other people think of you is none of your business.

Isn't this just so true!  If people look at me and think I'm a lazy oaf who sits on the sofa all day doing nothing much - does that make it true? (well to be honest occasionally, it probably is).  Of course it doesn't, these thoughts (if they exist)  belong to other people and while I might spend too much time thinking this of myself because it's what I think other people are thinking it.......... it really is none of my business.

3.  Time heals almost everything give it time.

Sounds corny, but it is true.  Though time is a construct that is individual to each of us. I have also noticed that some things heal more quickly than others, just like physical wounds do.

4. No one is in charge of your happiness except you.

Now this one made me think a little deeper.  As a practising Christian I do believe that there is someone 'in charge' - God.  However this faith also means that I have to accept that God gives us free will.  Which then  brings us around to the issue of happiness.  We have the choice to be happy - really? yes, I really believe we do.  When I first had some counselling a couple of years ago one of the first things my therapist said to me was that I used gallows laughter all the time.  I didn't understand what this meant until she explained it and I realised that sometimes she was right.  I laughed because if I didn't I would cry - I was laughing at the absurdity of the situations I was finding myself in.  At the time I felt a little offended by this - it felt like she was telling me this was not a good thing.  However as time has gone on I have noticed that actually my 'gallows' laughter is a part of the armour that God has given me to protect myself from all the absurdity around me.  It isn't something I do to hide what is really going on for me, it is there to help me cope.  And for that reason alone I think it is an absolute blessing!

5. Don't compare your life to others and don't judge them you don't know what their journey is all about.

Ouch, now this is a toughy.  I have been called judgemental to my face twice in my life.  Both times it has cut me down immediately.  Once by someone who new me very well and once by someone who hardly knew me at all.  It makes no difference to how it made me feel though.  We all make judgements all the time, it is a necessary part of life.  Do I want a cup of tea?  Have I got time to do a bit more crochet?  They are all decisions that I make after judging the merits of my situations.  It is therefore inevitable that we will sometimes end up judging other people, but this is where I will refer back to point 2.  If other people think I am judging them, that is their business not mine.  And then back to point 1, make peace with the things that have happened in the past.

I do sometimes look at my life and wonder if I would be happier walking someone else's journey.  However the journey of other peoples lives is obviously just the bits that I can see, I will never know someones whole journey.   I might sometimes look with envy on those who have more physically able bodies than I have.  However when I look at the rest of those peoples lives, I am soon brought back to earth with the contentment I need to carry on my own journey on my own path.

6. Stop thinking too much it's alright not to know the answers.  They will come to you when you least expect it.

I love this!  As someone with an appalling memory for important stuff, like peoples names - I really do know that complete joy when the name actually comes to you!  In the age of google where you can get an answer (or at least think you have ) to almost everything in a few taps it is hard to sometimes just let things go.  This is something I am daily challenged with by my two children, one a teenager, one almost there.  My eldest particularly is very precise in nature and likes to have an answer to everything.  I on the other hand am happy (usually) to leave loose ends.

7. Smile you don't own all the problems in the world.

Now I (along I am sure with many others)  have been on the receiving end of someone telling you to smile when something awful has just happened - gah - it makes me gag just thinking about it!  However if you are able to, a smile can make a world of difference to others.  It can diffuse anger, it can restore hope, it can give you a brief moment of reprieve.  I know this because I have been on the receiving end of others smiles in times of great need in my own life.  I have also been privileged to be told by some lovely people that my smile lights up a room - this may or may not be true but it makes me feel fabulous!

So I cannot say that I think these are definitely 7 rules to live your life by, but I do think they are all very sound pointers.  So much so that I am going to print it off for my 16 year old niece who is in a long term secure mental health unit.  It will definitely give us something to talk about when I next go and visit!

I also saw this picture also recently

and decided this is going to be my motto for 2014.  Saying what I feel has only really been possible through my blog, but slowly, slowly (very very slowly) I am starting to find my feeling voice in public with the people who mean most to me and hopefully this is going to continue into the new year.........

bye for now xxxxxxxxxxxxxxxxxxx

Holiday Time.

You may have notice I have been absent for a while - or maybe you haven't.  Shortly after mum died in February we made the snap decision to have a lovely holiday over the two week Easter holidays.  We went to Southwest America, did 4400 miles and the children had an amazing time.  For me and hubby there was a lot of reminiscing of a very similar trip we took before we had our first child 14 years ago.  Unfortunately I was rather ill for the majority of the holiday, however I was able to be thankful for being sick in very beautiful places rather than sitting around at home.

I have definitely hit a bit of flatness since returning.  My immune system having been very active attacking whatever the virus was that I had is still playing havoc with my rheumatoid arthritis.  I have finally admitted defeat (why on earth do I view it like that!) and phoned the hospital to get an appointment for a steroid injection.  Hopefully that might just jolt things back onto a more even keel.

Here are a few snaps from our holiday

 A little jet lagged but enjoying our first American breakfast.

on our way to the Grand Canyon we got to stop off at the church in the mountainside at Sedona

The next stop was at the Meteor Crater - the children were amazed!

 

 

we got to see so many amazing skys and beautiful sunsets 

sunrise at the Grand Canyon

 

 Sunsetting at the Grand Canyon

 Next stop - Monument Valley

 we did see lots and lots of road!

 but there was always time to stop and look at the flowers.

 and while the rest of the family walked I got to crochet at Zion National Park.

Then it was time to hit Las Vegas!

 and I got to meet up with my cousin Susan and her family who I hadn't seen for 17 years.

 and despite feeling rough, I still got to dip in the pool.

 we were staying right up there at there, beyond the top of this photo.

 My young American wannabee daughter at the Hoover Dam

The bottle tree ranch just outside Las Vegas

A trip to Victorville for hubby to see the airplane graveyard.

 

and then onto San Diego to meet up with Susanne a fellow blogger I have followed at Meditative Meanderings for over 4 years and her daughter Elizabeth.

 we got a guided tour of San Diego in just one day - this is the tropical house at Balboa Park, unlike the glass houses we have to have in England for these plants, this building was made out of slatted wood to give the plants a bit of shade - no glass required!

Californian Poodles!

C

 Fancy having your graduation ceremony here?  Hopefully this is where Susanne's daughter will get hers. Point Loma Nazarene University

 We could not leave San Diego without a trip to the beach, our girls looked for shells while we......

 sat and chatted some more.

and then it was on to Los Angeles!

 The children loved the amazing views from the Griffiths Observatory

 Not content with Disney in Florida - we had to try out the original park.

 To celebrate my first day of feeling almost normal we went for an amazing meal at the Encounter Restaurant at Los Angeles International Airport - my husbands favourite restaurant in the world.

 we stood in the footsteps of some famous people and horses.

 

 A rare posed photo of my teenage son.

there had to be a trip to another Universal Studios

 

and good to go and stuff that wasn't in Florida.

visiting Wisteria Lane.

 We also took a trip out to Edwards Air Base to visit my cousin's place and chat some more.

 and see humming birds :o)

and eat delicious food - thanks guys.

 

 A trip to Santa Monica pier on our last day

 You are never too old to go on the swings.

before we headed back home.

I hope you enjoyed that whistle stop tour - it has certainly got me smiling again on this cold and rainy SPRING morning.  I'm off to get my hair cut now.

All Change.

So I mentioned in my last post that I had made a big decision.  It is something that has been rumbling away for a few months now.  As my regular readers may know I have a condition called rheumatoid arthritis.  It is a condition that is always just there.  I'm fortunate enough to have great medication which has kept it reasonably stable for about 3 years now.  However, as well as aching joints always just there and preventing me from doing anything too active, the biggest effect it has on me is fatigue.

I will have had this condition for 16 years come this autumn.  It arrived 6 months after I got married (it's our 16th wedding anniversary tomorrow).  I don't very often think about what life was like before hand, that is one thing that can really bring me down.  Suffice it to say, I was very active, I used to run several times a week, go to the gym 3 or 4 times a week, walk and swim, just to name just a few acitivies.  In fact just weeks before I first became unwell my husband and I brought our first ever mountain bikes.

As well as having this condition I have also had 4 years of enormous stress.  This started with my sister suddenly dying, then becoming a kinship carer for her only almost teenage daughter.  After two years of constant anxiety while we tried to care for an extremely damaged child along with our two younger children we had to make the decision to hand her over to local authority care.  Then my father died, then my mother had a mental breakdown and spent 3 months in hospital, then my grandmother died in January this year.

Amazingly my arthritis has not got much worse during this time however the fatigue has.  For the last 4 and a quarter years I have been working my 20 hours a week as a children and youth Pastor for our local parish (2 churches).  I did take some time out to have knee operations 3 years ago and also 6 months unpaid leave to help with my recovery and the changes to home life with my niece living with us.  The parish I work for has been amazingly supportive, through much of the times of great stress (eg, my mum in hospital) work has been my escape.  It is something I felt called to do almost 10 years ago.  It started in a voluntary capacity for the parish where we live and after a short period of working for the local council when I decided to go back into paid employment I was offered the current parish in a neighbouring parish.

It has not been all plain sailing in the post, it has had plenty of challenges, however it has always felt like a Gift from God and I have always tried to treat it as such.  For the last few months however I have been having to come home from work and go to bed for several hours every day as my fatigue has increased.  Whether it is pain that increases and causes the fatigue or the fatigue that makes me more aware of the joint pain I have I don't know, but my joints are presently very very sore.  My breathing has become poor as my fitness levels are falling.

Being away on holiday in Orlando, Florida was great, what was not so great was the fact that I had to use a wheelchair for all the days out that we did because of the pain and fatigue my body has.  God has been speaking to me.  I finished 8 months of counselling last month, during that time I have been learning how to listen to myself without the critical voices that roam around me head interfering.  This has also enabled me to listen more carefully to God.

I am currently on sick leave from work and last week I finally realised it was time to stop working.  I know that if I don't have a go at getting fitter and loosing some weight now as I amble towards my mid forties, it is only going to get harder.  I might manage to loose weight and get fitter and still be in as much pain and suffering the same fatigue, but if I don't try then I will never know.  The way things are heading at the moment I feel I am going to end up spending more and more time using a wheelchair, if there is anything I can do to prevent this I have to give it a go.

So last week I had my resignation accepted, they have very kindly wavered my 3 month leave period due to my current health issues and so I will finish at the end of May.

The only problem I am now left with is how we are going to manage financially.  My work did not pay all that well, but it did pay for all the little extras we have come to enjoy.  The occasional spontaneous meals out, spending money on our holidays, buying extra things for the home, garden and the children without having to save up - all these things and probably a lot more are where my wage was spent.  Giving these up, and learning how to live on our reduced income is going to be a challenge, thankfully I do feel that God is with us.

So it's all change, on the whole I feel quite excited to see where God is going to take us and this new journey.  Hopefully it will include keeping on blogging :o).

Still Resting.

I have had a week of big decisions finally made, I am still quite unwell but the rest is definitely doing me good.  We have had some lovely sunshine this weekend and as hubby had the weekend off we have managed to get my veg patch sorted with new extra high raised beds that I can now reach easily.  My mum came and helped to replant all the strawberries that she had lifted from my old patch, as well as planting some of the seedlings that she had grown for me, peas, pumkins, broccoli and lettuce.  I have some carrot seeds to plant which I might try and do this morning as we are expecting rain this afternoon.  I will post again later this week when I will be able to tell you about those big decisions.

750.  Grace and peace lavished on me from my Father in Heaven.

751.  Freshly mown grass fragrance.

752.  My husbands healthy body!

753.  Another lovely film night last Friday.

754.  Taking my niece to church for the first time in a year.

755.  Finishing a little crochet doll to go with my daughter to school this morning as a mascot to help her get through a week of SATS exams.

756.  Lost photographs found.

757.  Finding a new on-line yarn retailer providing great value and excellent service.

758.  Kindly neighbours picking my daughter up and bringing her back home when she fell off her bike.

759. Watching my neighbours two grandsons (aged 1 and 3 yrs) washing their family cars.

Short and Sweet.

 It appears my rheumatoid arthritis is in need of having a greater presence in my life at the moment.  So apart from taking the children to their various activities I am not doing too much at all.  Still no reason to not count my blessings though.

740. More time with my mum and my neice, out for lunch this time with my two as well - such healing.

741.  A Doggy who will curl up with me.

742.  The persistant rain makes me feel not so bad about not getting into the garden to work.

743.  My lovely lightweight kindle.

744.  Film night with my hubby.

745.  Freedom.

746.  The protection of God's loving arms around not just my body but my heart and soul as well.

747.  Our NHS and my medication.

748.  Phone calls and dates with friends made.

749.  Frank discussions about house buying with my mum.

Too Spoilt

While in Florida 'The Sunshine State', I was allowed a luxurious hour and a half in a craft shop with my daughter.  Everything comes bigger over there even the craft shops.  I could have spent a lot longer browsing but knowing where my weaknesses are I decided to give lots of the fabric aisles a very wide berth so that I was not too tempted.  Something I did find was the yarn that I have made into a crocheted dishcloth.  It is Lion Brand Recycled cotton yarn and is aptly named Sunshine, now whenever I go to the kitchen sink a little bit of Florida Sunshine shines up at me :o).

It was lovely yarn to work with and I will definitely do some investigating to see if I can get some more of it, here in the UK.

Another little project I have been working on this week is this:

I bought a knit and crochet magazine which came with this yarn plus a blue and a red, the colours really sang out to me.  However once I started to use the yarn (100% acrylic) I realised just how spoilt I have become using mostly organic cottons.  It was scratchy and difficult to keep the tension  with (hence the wobbly look!). I decided to make a little project bag as I am getting into the habit of having several projects on the go at once (this helps me to craft a little longer each day without too repetitive movements making me stop).  With more than one project I seem to be constantly getting my yarns, crochet hooks and bits of crochet all tangled up.  This little bag will just do the trick and I have lined it with some fabric that came from the above named shop in Florida so that my hooks do not fall out!

And look there is another little project ready to find a home in here already using Sirdar Simply Recycled cotton - can you guess what it is going to be.  Maybe it will be in my next post.