My Update

My Update

My last real personal update on what has been happening with my progress I wrote about here:- A challenging Day now a New Day – this was a hard time when I talked about discovering that the Specialists pretty much would not be offering me any more spinal injections, or more the fact that they were not going to work down my spine like they said they originally were going to.

It was mentally a catastrophic moment, pretty much like pulling the rug out from under my feet and me falling in to some kind of dark scary abyss.

So what has happened since then?

metamorphosis_by_ffnana-d582qsv

Some of you will know that in March I will be attending a three week course at a hospital for Pain Management, this is where a group of professionals, from nurses, psychologists, doctors, relaxation therapists etc help you to learn to live with your pain in a better way, to manage it better, to manage your medication and to deal with outside influences and other people’s expectations.

It is within a small group and I have heard mixed reviews on how well it helps people.  I am very nervous about having to a) be in a hospital, all day for three weeks as I HATE hospitals, they always make me anxious, so it isn’t a great start LOL

Also I am nervous about having to be ‘out’ all day. I only ever do this with my family, who know me and know that when I am in pain, I want to be on my own, I need/must lie down, I need time out etc, I am not sure I will get this where I am going and I am not sure how I will deal with it.

I have also been told to ‘expect’ my pain to get worse perhaps to have flare ups during this course before it settles back down, that always fills me with dread.

You are also not allowed to do anything else during this three week period, ie no other treatments, so going cold turkey for me effectively as I have Gyro/Zero balancing twice a week and this really helps me with my pain levels and keeping me mobile.  This is another thing, I need to walk daily to be alright, how am I going to do this if stuck in a hospital all day, bleh.

They want you to not do anything else, so that you can see the ‘real’ benefit of what you are doing there without any outside influences, and I get that.

Now the nurse there recommended me the Mindfulness book which I have been reading and embracing their meditations.  It is an amazing book, so this in itself has made me feel some sense of positiveness about the course which is good.  You can read about my Mindfulness adventures here:- Mindfulness

mindfulness
mindfulness

So between my devastating news and now I have been doing lots of things, which I am finding (touch wood) helping me, they are as follows:-

  • Walking every day, at least 15 minutes, normally much more but pacing myself
  • Meditating twice a day and reading the Mindfulness book
  • Pacing during the day, using timers to stop myself when getting engrossed in something for which puts me in a position where if I remain in it too long I will pay for dearly later.
  • Not feeling guilty about stopping and lying down.
  • Learning to say ‘no’ to people and not feeling guilty that I cannot do things.
  • Completing a four week hydrotherapy course and going now on my own once a week and taking on the 45 minute bus ride each way which is quite a challenge for me.
  • Having zero balancing and or gyrotonic twice a week, the latter is quite a challenge on my body but allowing me to move in ways I have been unable to for ages.
  • Going to a dietician and trying to find out how to lose weight, why I am so swollen, is it the pills, allergy to some kind of foods etc.  She says I eat healthily and not too much, so one can only assume the pills are stopping me losing weight as I know they have an inclincation to put weight on, and also perhaps I am sensitive to some foods which causes bloating.  I completed a 6 week diet of no wheat and dairy which nearly killed me LOL, yuk so many plain things one had to eat, it’s alright during the Summer but during Winter much harder.  I got used to wheat free bread, but it was probably the thing I missed the most and pastry, ie croissants etc.  Can cope with the rest.
  • Went to an Alligment Healing Session with the most amazing woman, it has given me the drive to really want to meditate and spurred me on with the Mindfulness.  I also got to experience for a short period of time but nonetheless a period of time, no pain at all and my body feeling light as a feather and it was amazing and showed me there has to be a possibility somewhere for this to become permanent.  It is like finding the right key for the right lock.
  • Spring cleaning friendships – this might sound hard, but I had a huge blip of feeling very depressed.  I used to be an incredibly social person, had many many friends, did a lot, this has been a huge change.  I find that I feel I have not had much support at all from the mother’s at my son’s school. Fair enough I had only been there a year, but still only one parent ever offered to help.  I find it really hard to ask for help but I swallowed my pride, because my husband had been rallying around taking the kids to school, going out to food shop etc etc and working.  It cut in to his work time a lot and being self employed we were suffering financially too.  I emailed a class of 30 parents for help, nobody came back with offers, I did this twice then gave up.  I felt resentful.  But you know it is not their problem, it is my situation and if that is how they are, that is how they are.  I felt resentful going in to school when I became well enough, felt left out that there seemed to be cliquey groups that I didn’t fit in to because I had lost so much time when they had all bonded.  Then there were my out of school friends, some of which just drifted away, because I think it just became too hard for them, perhaps too inconvenient.  That hurt, because with those friends I thought I had a bond, but you know it is how it is, you can’t force someone to want to be your mate and support you, none of us want charity do we?  It is quite demoralising.  So I stopped mentally wanting those people in my life.  Then I started to look elsewhere, suddenly seeing a couple of people who were there, new friends, one’s who just know me as I am, have no expectations, met a lovely blogger buddy etc and have learn’t to appreciate those who are there, to make an effort with different people and to ‘say goodbye and well wishes’ to those who have now gone.
  • I have found work, yay!  Just a small amount.  I have had to change career which has been hard with no real qualifications backing the career path I have chosen, but through blogging giving me a platform to show other’s what I do, I have secured one social media account for a local company and also I volunteer for a charity that helps people with disabilities, they helped me, I now help them, paid and voluntary.  I research placements for youths with disabilities who want to find their dream work experience placements and it is a truly rewarding job.  I do need more hours, but this has been such a stepping stone and actually working is such a psychologically boosting experience, you feel a sense of worth, this job also gives me such satisfaction when I actually manage to help someone out.  I might, cross fingers, end up helping them with their social media also.  I also volunteer for a charity that help the aged, in an office environment and this has also proven to be a magical experience as everyone is so friendly.
positive quotes
positive quotes

I will touch on the therapies I have been embracing in another post as I am aware this has become quite a long read in itself.  I write this as it is cathartic to do so, so I hope that I have not bored you to death and that you find something of use in what I have written.

Have a beautiful day, Justine xxx

© Justine Nagaur

 

 

 

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18 thoughts on “My Update

  1. You have an amzing strength! Despite life struggles, you still make time for volunteering and helping others 👏👏
    Your retreat would go perfectly fine, I have faith, and i do wish you a full recovery. 💓💓

  2. Bravo! It is wonderful what you are doing and your strength is inspiring.
    I see you are a bit uncertain about the hospital; just try to leave behind the old perceptions as you are embarking in a totally new experience. Focus on tbe pluses and they come right after you.
    Shocked with the lack of compassion from parents at school…never mind.
    I knew I was right to make you the SVP of the rehab. UK’s got talent!
    Bravo! Bravo! Bravo!

    1. oh ive seen the hospital lol, it smells like one and looks like one haha…but i am just not going to think about it until it arrives and then what will be will be, i am seeing it as a positive thing and erm chilling..coughs..everything will fit in to the right slots..i hope hehe xxx I have talent? lol

  3. I somehow missed that you are having 3 blogs. I started reading your post and completely got drawn in, it was not boring at all. In contrast, you have such an engaging writing style, I could not have stopped. I wish you all the best for your recovery. Chronical pain is horrible, my mom has been suffering from Morbus Still for 12 years and keeps fighting against the pain. It is sad when friendships get lost, but true friends go through good and bad times together. Your braveness is admirable!

      1. she has been taking cortisol and painkillers for years, but has not been pain-free for ages. I think the hugest part is inner strength and the will to not let the pain win

  4. Brave, compassionate and kind – Justine, even though you have and are still suffering pain, you still find time to volunteer and assist others in need. I’m so glad that I’m following your blogs, and your journey. All the best with your hospital stay – they’re not the nicest of places, but as you said, this will help you to live a better, pain-managed life. 🙂

  5. I enjoyed reading about all the things that you are doing. You certainly are an active person in spite of your disabilities and pain. And I admire all the steps you are taking to get help. I know it is not easy. But stay with it and I am sure there will be a lot of benefits. I think your blog is helping a lot of folks.

  6. I am impressed , and certainly think you ‘re going to get much in the hospital , especially by force of will think you are and what drives you to achieve goals.

    A hug
    Mariángeles.

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