LUPUS - Onwards and Upwards

This year has had a challenging start for me health wise.  Over the last six months I've been having lots of tests, MRI scans, steroid injections into joints and various treatments in order to manage my condition and to establish exactly what is going on with my fluctuating health.

The additional diagnosis of Lupus SLE and Sjrogrens Syndrome recently provided hope in that additional medication may help with managing my symptoms.  Various things have been ongoing since September 2014 which led to this diagnosis.  It is likely that I have had these conditions for well over two years as it seems my initial diagnosis of Rheumatoid Arthritis was incorrect and in fact those symptoms were due to the former conditions.

My health had been going into flare for the past few weeks and the week after the half term holidays (during which I couldn't pace effectively) has left me largely bed bound.  I had another hospital appointment yesterday and am back on a course of steroids and also starting another medicine which hopefully will manage more of the conditions of my Lupus and my current flare.  I'm positive about the potential of this medication.  All of these conditions are thought to have been caused by the trauma of my accident and there is still so much to learn about the connections of our central nervous system / brain and physical conditions.  These are always complicated by my other orthopaedic health issues but an accurate diagnosis and medication targeted to help that should be a positive addition to my medication regime!!!  This new medication will take 12 weeks to take effect during which time the additional slow release steroid injection I was given into my muscles should help ease my symptoms until these new meds can do their work.  

I'm so fortunate to have a wonderfully understanding husband and two children to get up for each day.  It forces me to focus on pushing through many of my symptoms and I rest when they are at school/ work etc yet stops me from giving in.  Pain, mobility of my limbs and clawing of my hands and feet have been a real issue and seeming to increase in severity over recent years and it was the Hubby that pushed me for referrals to more Consultants.  I'm glad he did as it has led to these additional diagnosis which I feel positive about and the opportunity to medicate some debilitating symptoms is fantastic.

Source

Things can always be worse and I know many people have health issues far more challenging than mine but I felt that my health is interwoven into the make up of this blog and is a factor in my everyday and hence, a post documenting these challenges may help someone else suffering feel less isolated.  Remember to be kind to yourselves.  Take care,

J9 x

Sew Distracted

I'm sure many readers living in the UK are enjoying the fabulous series The Great British Sewing Bee.  I'm really loving it again this year.  It's wonderfully inspiring like the Bake Off - I watch an episode and it literally makes me want to get the sewing machine out and Make instead of Bake!!  I wish I had free access to their haberdashery!

I've been doing quite a bit of sewing lately - re-establishing my love of the sewing machine - my first creative outlet.  You may remember that I decorated Little Lady's bedroom last year.  I knew that her pastel blind would need changing and chose some gorgeous teal butterfly fabric from John Lewis.  I have had the fabric around 6 months (procrastination is a weakness) but after the Sewing Bee last week I finally felt motivated to make a new blind!!  It is a basic manual roll up design backed in blackout lining.  It has a simple pole sewn into the top seam and hooks hold it in place at the window.  I think it is a simple yet pretty solution - unique and very cost effective too as it is a large window!

The photos aren't fabulous as I'm taking them into the light but it does look sweet and coordinates well with the decor.  Of course the main critic - my lovely girl, cast her eye over it - and success, she was delighted! It looks a little gathered along the pole in the photos but you can just pull this out to the sides - then it lays straight - I just didn't realise while I was taking the photos!

I've got a long list of sewing projects to complete around the home and am hoping this new motivation will help me tick some of them off!  In all honesty though I'm struggling a bit this past week with my pain levels. I've decided today to listen to my body and give in, in order to help it rest a bit.  Hopefully this flare will then calm down and my pain levels will become more manageable.  I often use craft as a way to distract my mind from the pain I'm experiencing but the last couple days I've just covered the chores and could find no energy for anything more.

A couple of readers have contacted me about the accident that I sometimes refer to, progress on my on-going pain management and how I manage my family life.  I've stayed away from discussing this too much as I'm sure you understand this is a difficult topic for me and I don't want this space to become negative and heavy.  This blog after all came into being after journal-ling Project Gratitude to help with my emotional recovery.

However, I feel that it is really important to discuss disability so that it does not remain a taboo subject or that negative misconceptions on ability continue to prevail.  I think it's important to stress at the outset that I would be talking about my own experience and situation - disabilities are wide ranging and specific to the individual so by no means am I seeking to be an expert on anything but my own impairment.

Over the coming weeks, I have decided to break the subject of my 'disability story' into three elements:

• My Accident - Injuries and their Impact
• My Physical and Mental Journey 
• A Reflection on Things I've Learnt

In so doing I will not exaggerate, will keep medical details minimal, factual and concise focusing mainly on the road to recovery rather than dwelling on things that cannot be changed.  These posts will be interspersed with my normal crafty / homey posts as I don't want to overload any readers who do not wish to read this type of post.  Please do bear with me if this does include you - I don't wish to alienate anyone but on the other hand I would have appreciated this type of post if I'd found it when I did need it.

Finally, welcome to my new followers - it is wonderful to have you here.  I hope you have a fabulous week,
J9 x

My Mum & Me

 

My mother is a truly wonderful woman. She has been suffering so badly with arthritus and worn joints and the associated disability and pain that this brings. But through all this, she remains my rock.

As a young child, I was a daddy's girl.  I was a tomboy and much younger than my 'next' sibling, so naturally spent lots more time with my parents.  Sadly, my father died nine years ago.  I miss him every day.

During my twenties, my relationship with my mother evolved to one of respect, enormous love and true friendship.  My father's illness was not kind.  My mother nursed him so devotedly and we spent hours together sharing the strain, enjoying some sweet moments when they came and getting each other through.

My daughter Ruby was born the year after my father died and her and 'Granny' have a wonderful bond.  We found out I was pregnant with her on the Christmas Eve following his death.  The joy her birth brought gave us new energy to carry on fully living life.

When I had my accident, mum came and stayed with us for two months.  Her love and care of me and my family got us through a time of wonder - with a newborn, and immense pain, turmoil and life changing immobility.  She became motherly to not just me but to my children and at times, my husband.  I was 38 weeks pregnant when I had my accident, and Billy was born by C Section a week later.  Due to the pregnancy I wasn't xrayed and the real extent of my injuries weren't identified resulting in this delay...

God's plan is remarkable.  New life can bring such joy amidst tragedy.  I remained in hospital for a further week whilst Billy was discharged.  I had never left Ruby overnight before and now was separated from her and my newborn baby.  I knew that my mum and Ben were the 'other' best people to be looking after my precious littlies.  The children I was told I probably wouldn't have.  They kept them happy, hid the darkness from their eyes and kept love and fun a priority.

My mother and Ben supported me through the most difficult time of my life.  Through their strength and love I returned home to my family.  I spent almost 12 months in my house then.  Juggling a newborn, 2 year old, unable to walk and still in uncompromising agony.  It was hard.  I don't know how we got through it.  But I do know my mother was a key part in getting me through. 

At this moment, my mother is having a new knee joint put in.  In her case it's a more complicated operation due to a number of factors I won't go into here.  We trust in the surgeon, in god's plan and in our collective will to keep her going.

Mum, I love you beyond measure.  You have helped me through a time that felt so bleak and dark.  You love my children unconditionally, as you do me and I do you.  I am so grateful for everything you sacrificed for me growing up and am thankful for you being such a wonderful part of my life every day.  I am thankful for the perspective that being a mother now brings to my childhood.  I am thankful for the support, love and friendship that you bring to my life as an adult.

My heart is with you on this new journey.  I will support you as you did me.  I will send love, warmth and positivity across the miles and visit you often.

Be strong.  Fight to walk again.  Keep the negative thoughts at bay and recognise the small steps of recovery.  Speak up when you are sad.

Above all, know that we love you beyond measure and say when you need us - I'll be there for you Mum.

Always and Forever.

J xx   

Managing Acute & Chronic Pain is a Real Pain

As the children have been back at school for a couple weeks now, we're all settling back into routines.  I love my time with the children during the holidays but it is also nice to get some more time to myself during the term time.  I find I can pace myself through the day better because I can plan my day's activities that bit more. 

I don't enjoy the active morning starts though. 

I have to take strong painkillers to be able to put any weight on my left leg since my accident.  I walk with a crutch / crutches / use a wheelchair / scooter depending how my condition is on each day.  It's unpredictable, which can be frustrating.

So, when my hubby gets up early for work (5:30am) I take my first batch of tablets (tramadol, paracetamol & oral morphine).  I take lots more throughout the day but this morning combination works great if I can then have a couple more hours in bed to let the painkillers work before I get up and put my weight on the leg...  However, during term time that's usually just not possible.  The morning routine, no matter how I've tried to jiggle it around, means that I am up and on my legs before I'm properly pain relieved.  Then, I struggle to get on top of my pain until around 2pm later that day, when I'm about to get ready to collect the children and extra movement will result in more pain.... 

Over the holidays, the way I manage my pain works well because we can have 'slower' mornings.  We may be up early, but the main movements are limited.  It's been a shock to my system again this term- the impact that having a good pain management regime has and how change affects it.  I can't take any more drugs (trust me) but struggle with pain versus the need to do things to be happy.  A tricky combination when the more activity you do the more it hurts...

If I do something that's important to me or the family (like R's party) and then have extreme pain (resulting in me spending Sunday mainly in the bedroom) then I've learnt to accept that because the trade off for me was worth it.  But doing something that is so 'normal' like school drop off (even though I park right outside) has become a huge obstacle in my daily life. 

I don't want to moan, because I've come to terms with what has happened to me and value all the other elements in my life which might not otherwise have been.  But I do struggle emotionally with not being physically able to do tasks that most people don't have to think about.  I may be able to do them at a push (trust me I'm quite a determined character) but there will always be a price to pay in terms of pain and mobility at a later time-whether that's the day after or during that night.  There's an emotional element too - the need to be fully 'with it' so I can function as a mother as opposed to the level of pain experienced, which again impacts on mood, reactions to situations - actually impacts on everything.

It's not an easy thing to overcome and I know what the problems are for me, which I guess is progress from previous years. I did participate in a Pain Management programme at Frenchay Hospital and found it very interesting.  I have applied so many of these techniques (being kind to myself, saying no, medicine use etc) but there is no cure for the pain / disability I now face.  Yet, I want to be the best mother I can be and not simply say "Not now dear, mummy's legs hurt" because that'll only be the big stick I beat myself up with later on.

Hmmmm.  Overcoming the school run is definitely a tricky one for me.  Activity when not fully pain relieved is excrutiating.  But the children need to go to school!!  I can't take my meds any earlier because I have to space them throughout the day to last a 24 hour period which is already being pushed.

This post has become a discussion of the issue straight from my head...  I don't have the answers but I know I'm not the only disabled mum that struggles with pain / disability and all that that brings.  Sometimes it just helps to know that someone else is experimenting too... trying to find a way that works for our family.  So there we are.  That's what I'm trying to overcome at the moment!

My accident didn't just mean my legs don't work well anymore.  It means I'm always in pain.  It's only the level of that pain that changes.  But I'll keep trying.  I'll keep smiling and looking for simple things or moments that bring happiness - of which there are so many. 

It would be a horrible world without that.... 

J9 x

Sunday Stars

I'm not really a superstitious character, but hubby passed me the mag section of a paper today and as I flicked through the pages I stumbled across my stars.

It read:

"It's prime time to start projects and believe in your creative talents". 

With regards to love it said:

"Once you were neighbours, now it gets very romantic".

Well, my now husband and I lived in adjacent semi detached houses at University.  Needless to say our romance led to marriage, kids, happiness... due to celebrate our 10 year wedding anniversary later this month.

The former quote I'm choosing to take as a kick up the behind - a much needed push to be a bit more open with my friends and family about this blog and my creative exploits.  It's funny, my family tell me to believe in myself often and I dismiss it shyly.  Yet Mystic Meg writing it in this weeks stars struck a real chord with me!

How is it that some people exude such confidence and self belief, yet others need much reinforcement and support before gaining even a degree of that self esteem?  My confidence took a huge knock from the results of my accident anyway. Now five years on I'm rebuilding my inner self as well as accepting the changes to my physical self.  I've accepted the wheelchair and crutches as tools to help me live life and that's what I choose to do.  I need to live this life...

Well I'm taking a metaphorical pat on the back from dear Meg and looking onwards and upwards....

I'll take courage and follow my path.  My first ta dah will come this week.  I've declared it and therefore, it will happen.

J9 x