Where I’m Up To…

Hi there again, thanks for checking in with me.

Probably not got a lot to say other than another update with where I am up to and a brief taste of where I plan to be in the near future…

This week I am having a break from the reduction process, mainly because I want to enjoy the upcoming ‘Wed-Fest’ over this bank holiday weekend in Scotland.  So, as far as the reduction goes, I am currently at 50% with the Amitriptyline and at 33% with my Gabapentin reductions.  With no increase of pain and massive sense of my head space being cleared and having freedom from fogginess!  All I can say is how much I now value clarity of mind – I can’t really believe how I had been living and operating without the clarity I have now, and I still have a long way to go with my reductions.  I haven’t even thought about reducing the Tramadol yet so whatever effect hat is having on my body I will surley notice when that reduction process is underway.

My plan for the future is coming into view now.  I am looking to the end of August (9 years since the first operation) as the point where I hope to be clear of all medication and back to as close to ‘full strength’ as possible.  I start physiotherapy on Wednesday so that will help me with starting the journey of re-strengthening the muscles in my back and building my fitness levels back up.  I hope that this time frame is not too ambitious but I do believe that if you don’t set a target there’s nothing to aim for and that motivation is a challenging thing to find for a vague goal!!!

All in all, I have surpassed many of the goals I had set by a long way.  The only thing that has been more difficult than planned is the withdrawal process.  This massive challenge I have had to face has also halted my physical recovery somewhat as, when I am struggling through the symptoms, my energy levels are no where near enough to be up and about and building my stamina and fitness back up.

So the medication reduction journey will be continued as of next Tuesday, and the plan is that I will, hopefully, be off all my neuropathic medication by the end of May.  I can’t wait for that.  My doctor has given me a sick note for work that will run out on the 23rd May.  Hopefully that will be when I can restart work but that is not guaranteed, it’s all dependant on how I get on with the drug reduction process.

Fun times ahead!  I’ve got to say that joining Love Film was well worth it as the opportunity to watch movies when I’m feeling particularly rough is very much appreciated!

Till the next time – have fun and enjoy life, I will certainly be trying to that without any withdrawals!!!

Another Week and More Withdrawals

Well, if I thought that the Gabapentin withdrawal was rough Amitriptyline is another beast altogether.  This week has been rough, some incredible moments of clarity and feeling great but they seem only like fleeting moments.  The rest of the week has been tough.

My sleep has been disturbed by intense dreams, not really nightmares but some of them have been incredibly vivid and intense.  I have been waking 2 or 3 times in the night (usually between dreams) sweating and still feeling the dreams in my body and as a result at times Gill has been sleeping next door in the spare room.  I don’t blame her!!!

Most of the time and especially if I have just reduced my doses, I have been feeling really rough, my body has been aching and tender – sometimes it hurts to even move.  I still have that nagging cough, it usually comes to say hello once I do start to move or talk. All in all I have been assigned to watching films, television or the interweb, despite my desire to do other things (reading, playing guitar etc…) it has been too much of a challenge.

On better days I usually feel a bit more together by 2pm and I have been able to get into the garden and do some veggie planting and nurturing for an hour, or run the vacuum cleaner round or other little housework tasks.  I am still only able to do about 20 minutes of light exercise at a time, sometimes I can now do a couple of stints in a day.  I’m expecting to get a referral through for some physiotherapy to start in the next week or so, that will be really good as it will be another positive step towards building back my strength and stamina.

However, despite my grumbling, I am now at 50% doses on both Gabapentin and Amitriptyline – compared with the pre operative state of play.  So, when I think of that, it’s well worth the pain, discomfort and frustration.  If the brief moments of clarity are anything near what it will be like once I have reduced as far as I can then I will be incredibly happy.  I’m also losing weight (!) it seems to be dropping off I’ve lost nearly a kilogram in the last week with very little exercise being managed, so another plus side!Currently the day to day is pretty crap, but there is a purpose to it and I know I’m heading towards the incredible goal of no medication and no pain.  We’ve also just booked a holiday to France in July/August for 11 days so that’s another thing to look forward to.

Thanks for reading!!!

Withdrawal City!

My last post was a little while ago so I thought another update was well overdue!  I have been struggling to keep my head focussed in the last few weeks, hence the lack of posts!

Since the last post I can report that…

1. My Medication reduction plan is in place (more below)
2. The wound from the chest drain is still healing and has made significant improvement.  I am having it checked and redressed by the district nurses every other day and Gill or I am able to change the dressing the days I don’t see the nurses.
3. The infection from the catheter has cleared up, thankfully!
4. My capped tooth has remained in place so I have had no more unplanned trips to the dentist!
5. My strength and stamina is improving (more below) and the cough has reduced although it still lingers on!

Medication

I am well on track with my drug reduction process.  So far I have reduced my Gabapentin dose by 50% to 300mg twice a day and I am now working on reducing my Amitriptyline dose to half of the pre operation dose.  All in all I have not noticed any increase in the pains I had before the operation, I have had a few sharp stabbing pains but these are mainly focussed in the operation site, so I think they are more to do with the healing process than anything else.  The fact that I have managed this reduction is great, I feel so much more alert and have improved clarity in my thinking processes – this is a massive improvement and one I welcome wholeheartedly.

However, it is not at all easy to reduce the medication.  Each time I reduce the doses I have disturbed nights sleep (waking in the night with cold sweats etc…), vivid and nasty dreams and noticeable withdrawal symptoms that last for about 3 to 4 days.  I have been working on a program that I have set up where I reduce my dose every 4 days, this means I try to get at least one day where I feel alright before I go through the motions once again.  This can be a gruelling regime but one I am committed to as once I can come off these tablets I will know the success level of the surgery.

This system I have set up will mean that I will have reduced my Gabapentin dose to 300mg ONCE a day by the 3rd May and I will finish the Amitriptyline altogether by the 11th May.  Of course if I begin to see any signs of excessive struggle or increased pain the reduction process will be amended but, as it stands, I am committed to this plan.

Strength and Stamina

I am now able to get out and about much more than the last time I posted.  I can do about 20 minutes walking the dog each day and I have started to pick up small household chores as I can.  I have a plan to try and increase my activity every week and I hope to get a referral for some Physiotherapy from my doctor today.  All in all I am doing so much better than expected.  Last Thursday, 3 weeks after the surgery, we went out for 40 minute walk with the dog.  This helped me to realise two things.

1. I have recovered really well and am ahead of my expected rate of recovery.
2. I have limits and at the moment 40 minutes of walking is too much to cope with!  I had “Jelly Legs” for the rest of the day and was still exhausted on the Friday!

Gill has, as expected, been incredible in looking after me, however she is still having to do much more round the house than me, which can be tiring for her alongside everything else she is doing.

All in all I feel very positive and excited about the next phase of my journey.  I have made some real commitments that I hope will help me take advantage of this and in some way I believe that I have come into a time of acceleration where the things I have missed out on in the past 8 and a half years will be caught up with and fully restored. What that will look like I am unsure but I know that it will be GOOD!

Thanks for following this blog, I will continue to update when I can.

Week 2 Recovery Update

Well, here I am again with another update and a fresh looking blog page!

My recovery seems to be going really well and, with regards to the operation, I feel stronger and better each day.  This is in stark contrast to 8 and a half years ago but the journey is only still in its early days, so I don’t want to get too ahead of myself as I know I am still in a vulnerable state.  However, I have developed an annoying cough over the last week that causes me quite a lot of pain in my chest which is very frustrating.

Medication…

I have begun to reduce my medication, which is proving to have its own challenges.  I am taking more medication now than before the operation but the main reasons for this is to help reduce swelling and control pain from the operation itself.  I am currently on the journey of reducing the original medications I take that deal specifically with neuropathic pain.  The big 2 drugs I am taking in this regard are called Gabapentin and Amitriptyline they are addictive drugs (one dr. said they were dirty drugs!) and, unfortunately, I’m hooked.

I have previously blogged about these medications and the side effects that I have suffered from them and, as you know, I really can’t wait to see how far I can reduce them.  Gapapentin is the drug that has caused me the most grief, the drug is designed to stop your nervous system from becoming overstimulated and essentially dampens down all of the signals that are being sent to your brain.  This is mainly used to help epileptics reduce their fits and, if they do have a fit it’s severity is reduced compared to what it should have been.  The drug also works well for pain management and as a result of my pain I was initially given a mild dose of the drug.  This was quickly increased to the maximum dose that a person can have and the side effects of this drug meant that I struggled to think clearly, join in with conversations and be “in the room!”

Now I am reducing the Gabapentin dose that I take.  When I was in hospital the doctors cut my morning dose of the drug by 50% with very little side effects felt.  I am now undertaking the reduction of the night time dose, which is a different kettle of fish altogether! Even reducing the dose by 1/6 (the smallest reduction I can make) causes a big reaction.  My sleep is disturbed and I wake in cold sweats, my dreams are extremely vivid and sometimes distressing. When I wake up my skin feels like it is crawling, I ache all over and I can feel quite disorientated.  Not the most pleasant of experiences, it is however an necessary evil if I am to come off these drugs.  This week I have been able to reduce the night time dose by a third and in a couple of days I will step it down again to half.  Then I will try and do the same with the Amitriptyline.

All in all the side effects of this medication reduction will pale into insignificance if there is no increase in the pain levels as the increase in my clarity of mind will be massively increased and my stamina levels should also increase, meaning I could work more hours (if I want to!).

Stiches Out…

This week I had my stitches taken out from where my chest drain had been and unfortunately the wound has opened up again.  I have had it packed and redressed by the nurse at the doctors surgery but this is not an ideal development.  Gill will need to redress the wound over this weekend as it is a bank holiday so the surgery isn’t open for the nurse to do it.  However there is no infection in the wound and the prognosis is hopeful for the wound to heal and knit back together.

Infection

Frustratingly I am now having to take some antibiotics as have an infection in a rather sensitive area!  During the operation I was catheterised and where the catheter was removed there must have been a small cut made that has now become infected.  As I’m sure you are aware this is not pleasant as it is tender and uncomfortable to say the least.  Hopefully the extra medication will deal with this over this weekend and it should clear up quickly.

Tooth

In the last 2 weeks I have also had trouble with one of my front teeth.  As a child I chipped one of my front teeth which was ‘”root filled” and had a cap put on.  About a month before the operation this cap came off and the dentist said I need it replacing.  I am currently in the middle of this process and as a result I have a temporary cap fitted.  This cap however has now come off 3 times since the surgery (twice in one day!), resulting in unplanned trips to the dentist to get it put back on.  Each trip the dentist uses a stronger adhesive and hopefully the latest trip will be the last visit until I have the final cap fitted.  This has meant that I have been out and about much more than planned which has been a challenge but also a good platform for building my stamina back up (always look on the bright side of life…)

So there it is, I am doing well all considering.  If you pray for me I would ask for 5 things to be the focus:

1. The reduction of my medication
2. The healing of the wound where my chat drain was
3. The infection from the catheter to clear up
4. My capped tooth to stay on until my next planned dental appointment
5. Continued recovery from the operation especially around stamina, strength and the reduction of my annoying cough

Thanks for reading this – your support is, as ever, incredibly precious to both me and Gill.  If you live locally and want to come and see me please get in touch and we can arrange a time for you to come and visit.

One Week On…

This time last week I was on the table with a team of doctors operating on me, I remember the moments just before I went under, the room was spinning as I was given a dose of Ketamine to knock me out. My next memory was coming round, I have vague recollections of being disorientated and panicked in the recovery suite and then felt the pain hit me hard.

The operation lasted for a total of 5 hours and the operation was largely successful. The doctors had to chisel away about half of my vertebrae and then do a bone graft from one of my ribs to stabilise the joint. They also cut out all of the scar tissue from the last operation. Unfortunately one of the nerves had become crumpled as the scar tissue had formed around it so they had to take the nerve away as well as the tissue. This might leave me with some numbness on my left side, not that I have noticed yet!

As far as success goes I don’t want to count my chickens but I have had very little stabbing pain and I am now reducing my medication and will see how this develops but early indications are positive. This does not mean I’m cured, far from it, but as the next few weeks unfold I expect that the swelling will reduce, the scars will heal and as my back regains strength I will be able to see a fuller picture and then I will be able to understand the impact of the operation.

After the surgery I was, quite incredibly, only in hospital for 4 nights and went back attend a clinic appointment on the ward yesterday. I have had my chest drain removed and now will not go back into the hospital until the 8th May when I will see the surgeons in the out patients clinic to get a fuller picture of the surgery and see an MRI scan that will show their handiwork.

All in all, apart from the expected tiredness and pain, I feel good – still vulnerable and weak – but good nonetheless.

I want to say a BIG thank you to all of you who have been following this journey and have prayed for and supported me. I’m lucky really as I know that many people will go through similar and far worse experiences with hardly anyone to support them, it’s those people to whom I take my hat off.

One more sleep

Well, this is it. One more sleep till I go into hospital. Two more sleeps till the operation.
It feels weird knowing that in 48 hours I will be in a hospital bed recovering from surgery. It’s a numb feeling, like the calm before the storm. There’s nothing I can do to speed up the process I just have to wait.

I know that tomorrow will herald a new day, something being birthed, another twist in my journey.

I often think that new beginnings should be easy, something shiny and fully working. That’s not necessarily the reality though. This new day will start from an place of vulnerability and fragility. Who knows what the days will look like once I’m through the operation. I hope for success resulting in being able to come off my medication fully but I also know that for that to happen, I will have to recover well and fight for improvement each day. I think I’m ready for that, though to be honest I’m not looking forward to it!

Becomming a Pin Cushion – Again

Well this is it now, I’m all sorted for next week, unless a test result comes back to complicate the process.

It’s coming back to me now, needles inserted to draw blood, the phrase “..get ready for a sharp scratch…” before they jab your arm to get some blood out, it’s all familiar and you just have to get on with it.  It’s quite amazing really, what the medical world can do, with all the machines to monitor pulses, blood pressure, heart health, looking at bone and tissue without needing to break the skin.

However, I know that there are some things that medical advances and technological breakthroughs can’t avoid. Anxiety is one of those things.  It’s a real struggle to get my head around what the next weeks will be like.  I have memories from last time that round are not helping.  As much as I can rationalise what is happening and the potential benefits that will come from this operation, I still can’t help knowing that I have some fears that cannot be pushed away and avoided.

My dreams have been quite surreal, lots of dreaming about pain and then waking with real intense pain in my back has not been a pleasant experience and it’s now happening  most nights.  This is hard to deal with and I have been trying to engage with the emotions that arise and allow them space in my head.  All to often we are told to just rationalise our fears, sweeping them under the carpet and allowing them to grow and become stronger and cripple you all the more.  This is not what I’m trying to do.

Fear is a real thing and I believe that I need to meet it head on, stare it down and say “…you will not define me…” this is nice and easy to say and 100 times harder to do.  However I will keep saying this to all my emotions, knowing that if I allow them space they can become a real strength in my character, whether they are positive/negative/neutral they are all me and I am trying to know that as I deal with the next few weeks I am being the real me.

I don’t want to be a typical bloke, who doesn’t allow emotions time to air.  I need to let all of my emotions time to breathe, engage with them and release their real strength as part of me.  I want to find a place where I feel balanced, at peace and real.  Not an easy thing to do but, for me, this is where I need to be and I need to try and stay at that place along the roller coaster of life and these next few weeks, whatever they may bring.

Not long to go now, after today I have just got 3 more days to get through before “Operation Day…”

All’s Well Now!

For info…
I’m feeling better now, just a bit of a cough left lingering on. Went for my pre-op visit yesterday and all, it would seem, is fine.
Thanks for your prayers and concern, they’re massively appreciated.

Quick Update…

Just a quick update to ask for some prayer/positive thinking!

The last few days I have been struggling with some flu like symptoms. This is a big worry with surgery less than 2 weeks away. It might be man flu and be gone in the morning but it could also be something more sinister. I need to go for a pre-op appointment on Tuesday, so if I am unable to shift this before the weekend I will be concerned that I will not be fit enough to attend. I will, hopefully, be seeing the doctor in the morning and hope that there will have been an improvement by then.

This is another barrier to get over but I know the power of prayer/positivity – and if I ever need it, now is one of those times!

Thanks, in anticipation of your prayers/positivity and I’ll keep you posted!

By the way, as far as I’m concerned, prayer and positive thinking are essentially the same thing. If the base line reason for doing it is out of Love for me, without any selfish ambition, the source is the same. I might call it “God” and you might not but if Love is the cornerstone, then it’s is just semantics.

This might be a little bit controversial, for some people reading this.

Finally – Some Progress!

I have a date for surgery!

The 22nd March 2012 will be the day I go under the knife for major surgery for the 3rd time in my adult life!  Some people say that things come in 3′s so hopefully that’s it for me as far a surgery is concerned!

Honestly, as much as I feel relief that something has been decided, I have little other feelings with regards to this.  Anxiety is not raising it’s head and fear is not stirring, I don’t know whether this is something to rejoice in or have some concerns over!  I think I’ll go with rejoice for I know that as these next few weeks unfold they will no doubt play their part.  It’s not that I want them to take centre stage but I need to take note and stand up strong when I need to, knowing that if it becomes too overwhelming I have some incredible people who will hold me up, talk it through and shed tears with me all in the right time and place.

Anxiety and Fear are real things but they seek to hold you back and keep you down.  I should know, I had 3 years of their dominance before I took some tentative steps forward.  It took some real hard work to take them on to tame and suppress them.  I know they are still there lurking in the background and to be honest I sometimes give into them like an addict falling off the wagon.  I believe that I need to allow myself to feel and recognise their existence when they show up, I also need to know that when they do they will not have space to define me or have the strength to overpower me.  I may need reminding of that!

So all in all I have less then 4 weeks before I have more life changing surgery.  It’s a part of the journey and I might sink or swim – maybe I just need to find some armbands…