What's in a name?

I have spent 20 years chasing a diagnosis.  Trying to get a doctor to say those magic words "I believe you" - I have an explanation for exactly what you are going through, it's not all in your head, it is a very real thing.

I'm still not really there.  But yesterday, I got close.  

I went in for the follow up to my nerve release in my legs.  The doctor asked me how everything was going, and when I told him that the nerve pain was gone, he wasn't surprised.  Not only was he not surprised, he was expecting it.  And he was so convinced, he had already looked at his schedule for when he could do the same surgery on my right leg.  The nerves in my left leg were so badly damaged when he went in to release them, that he knew I was going to have instant relief.'

My problem is, I don't know why my body is doing this.  Why have I needed to have the nerves released in my wrists, elbows, and now my knees?  I think it's because I have all the characteristics of Hypermobility, and my Physio agrees.  Unfortunately, a Physio agreeing isn't the same as a diagnosis.  And without a diagnosis, if I have another flare up in another joint (such as my ankles), I am going to have to go through the agonisingly long process of convincing a doctor that my history shows that it is most likely nerve entrapment.  Each different flare up has taught me more of the right questions to ask, but why do I have to know the questions????

And my next concern, what if this is genetic.  What if I have passed on the way my body is structured to any or all of my kids?  Are they looking at the same path as mine?  How much will being able to say to doctors "my mum had this" is going to help make the doctors pay attention?

So do I pursue a name?

Do I ask someone, my specialist or my GP, to quantify what exactly is "wrong" with me?  Will this give me a sense of closure, knowing that there was a legitimate reason for my pain, that there have been and will be others who have had the same thing?  Most importantly, can I use this name to help others?  Will it help my kids to be able to give an actual medical term if they are having the same symptoms?  And can I then go out and find others, and support and encourage them?

I keep coming back to the same question.  Now that I can see a light at the end of the tunnel (and I'm pretty sure it's not another train), what do I do with this?  This has been too large a part of my life for too long to mean nothing.

How can I use my pain to help others?

I think I have a book in me, it is starting to bubble away in the back of my mind, and I think it may be time to start spending time with it, seeing if it is worth coming out into the bright light of day.

I think I would like to start doing some professional speaking.  I love standing up in front of a crowd and engaging with the audience, whether through song or through words, and I think I may have a lot to say.  I would like to tell people to trust themselves.  To push when they think they know they should.  To not take it when the "experts" try to squish them into a box that doesn't fit.

Most of all, I want to tell people how amazing God truly is.  Every step of the way, I can see His hand all through every single aspect of my life.  

I am reminded of the Footprints poem, and I know so many times there is only one set of footprints in the sand of my beach.  So many times in my life that I couldn't have possibly taken one more step myself, and that Jesus has always been the one to carry me.  I want to tell people that the level of your suffering does not mean that God loves you less, or more, than anyone else.  That suffering just is.  And whatever your level of suffering, God wants to use that suffering to make you cry out to Him. 

The Depth Of Your Pit

It's a strange thing having a painful story.  People never know how to react. Worse than that, I start to see that people feel that they can't share their struggles with me, because they have judged my situation "so much worse", that their troubles couldn't compare.  So to help them, and me, I have come up with a little theory - THE DEPTH OF YOUR PIT

Having trouble in your life is unfortunately par for the course, no one can escape it, no matter how well they seem to hide it. 

If you are at the worst point you have ever been, you are at the bottom of your "pit".

Now in comparison to my pit, yours may seem shallow, and in my personal struggle, I wish that my pit was the same depth as yours

BUT....

The depth of your pit is the depth of YOUR pit.  It is still the deepest you have ever been.  You are still sitting in the miry mess that is normally at the bottom of a pit.  You are still sitting there looking up at the sky wondering how you will ever get out.  Exactly like me.

I think if we can learn to look at each others' struggles with this thought, then the need for comparisons and competitions can be removed.

Personally, I like to hear about other peoples' struggles.  Not because I get any sick enjoyment out of it, but because I know first hand the joy and hope that is born from someone taking the time to listen and hear what is being shared, and I hope that I am able to give that to others.

I often ask God why he has given me these struggles, but I equally ask Him to give me ways to use them, to not let them be for nothing.  I truly believe that everything I have been through has made me more compassionate.  And for that, I am so very thankful for everything I have been through, and will continue to go through.

Less than a week to my operation

I really wanted this to be a happy post.  I don't want to whinge, I want to be excited that my surgery is almost here..... 

I remember those last weeks of pregnancy, when I just wanted my baby in my arms.  

When I was so uncomfortable I couldn't sleep, could barely walk, and everyone asked inane questions about how long I had left.  

That's what this feels like.  

Every position I find that makes one part of my body comfortable, is ridiculously uncomfortable for the rest of me.  And everyone who asks is surprised how quickly the surgeon got me in, and say I must be so excited that it's so close.  And I am.  

Actually, I'm not.  At the moment I am completely fed up.  I am cranky that it took 11 months from my first presentation to hospital in absolute agony for any doctor to even suggest doing an ultrasound of the nerves in my knees, the equivalent place to my elbows, when I was having IDENTICAL pain in my legs as I was in my arms.  I am cranky that I started talking to doctors about the weird symptoms I was having 20+ years ago, and was written off by every type of specialist you can imagine.  I am exhausted that my dysfunctional family was often pegged as the cause, making me dredge up that stress over & over & over again.  I am even disappointed that the doctor that told me he would "get me in within days" of my appointment took 2 1/2 weeks.

I am so impatient.  I want it to be next Wednesday already.  Actually I want it to be the month after that, when I have had both knees done and I am (hopefully) pain free.  Then I really want it to be at the point when I am fit & active again, when I can say I will do things and not let anyone down. 

And I'm so lonely.  I have a great circle of friends, who I am friends with in real life as well as on Facebook.  When I share my struggles on Facebook, they read them and then when they run into me they tell me how they care, and how they have been praying for me.  The problem is, as I become more of a hermit, unable to go out to many places because of the pain, I don't run into them any more.  So the encouragement I had been getting disappears, at a time when I need it even more.  Then I beat myself up about it, because I know that it's my fault I'm not running into them, not theirs.

And I am scared.  Scared that this operation won't be the answer.  Scared that something else will fail in my body, like my legs did after my arm operation.  Scared that I am still recovering from Chronic Fatigue, and that even with the pain gone, I still won't be able to get things done.

My biggest prayer at the moment is for peace.  I know that in the light of 23 years of pain(7300+ days), 5 days is absolutely nothing, but I seem to be sitting in that time thinking through everything I could be doing if I was well, and worrying that things won't go to plan.

I am also praying for answers as to what I am meant to do with this.  How can I use the lessons I have learnt through this battle with doctors to help others?  I don't want what I have been through to be for nothing, because I don't quite know how to cope with the idea that it just happened and that's it. 

So if you have taken the time to read this, I thank you.  I am grateful that you care enough to be on this journey with me.  My one request of you is this, please let me know.  Just like the post I shared this on.  Or comment.  Or call me.  Or drop in, I'm almost always home.  And remember, I am not the only person you know that feels alone, please let someone else know you care, because they may not be in as good a place as I am, and your call could be the one thing that stops them doing something permanent.  Let them know you care, before you can't. 

What is my identity?

I have had a friend comment recently how I need to be careful not to let pain become my identity.  That they have seen a lot of people with pain let it become their identity, and I need to be sure that I don't do that.  While I think this is a valid comment, I think it truly comes from a place of misunderstanding.

My pain is all-encompassing.  I very rarely have a moment where pain isn't on my mind.  If I am blessed with a time without pain, I am considering how hard I can push myself so I won't end up with a major flare up.  When I wake in the morning, I lie there as long as possible before moving, because at that point I have a relatively small amount of pain.  When I get dressed, I decide what to wear based on how much it will irritate, or make things difficult throughout the day.  I cannot do a single thing without pain having an impact.  My pain is the filter that I look through to see my whole life.

My pain has changed me.  I am no longer the person I was before I had chronic pain.  I can no longer put my shoes on and clear my head by going for a long walk.  I can no longer work full time.  I can no longer make plans without warning that I may have to cancel at the last minute.  My past self is just that, past. Even if I have my operation and have my pain taken away, I will never be the same person again....

And I am so glad!

I am now more compassionate.  I understand what it's like to have an "invisible illness", that looking at a person is never enough to understand them, that they may be battling far more than I can ever realise.  

I am proud that I am outspoken about my pain, that I don't simply hide it, because it has allowed me to have great conversations with people who also have pain, helping them see that they aren't alone, like I have so often felt.

So back to my friend's comment, about pain being my identity.  I think my pain makes other people uncomfortable.  I also think that they don't realise how all-encompassing it truly is.  The fact that I can talk about anything else is the thing that is amazing.  So my identity is certainly shaped by my pain.

I have also been incredibly blessed by my pain.  I have seen how strong & comforting God is.  I have learnt how to have amazing joy, even when it seems I have nothing to be happy about.   I have learnt that my hope is in Jesus, even when my life seems completely hopeless.

So what is my identity?  I wear many hats.  I am a wife. I am a mother.  I am a friend.  As important as each of these are, they do not have eternal significance.  And that is why my identity is in Christ.  Christ died for my sins, to allow me to be reconciled with God the creator.  Without Christ, my life would have no hope, and in my darkest times, I would certainly find no joy.  

"Do you not know that your bodies are temples of the Holy Spirit, who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honour God with your bodies." (1 Corinthians 6:19-20)

The outside of my temple may seem broken.  At times it may seem that all I can consider is my pain.  But know this, at all times I hold onto the verse

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4:16-18)

Emotional Recovery??

I have been struggling for the last few days with what to write.  I really want this blog to be an honest reflection of my life, but when things get really sticky, it's not something that you necessarily want to share.  But since this is my Road to Recovery, and it is my emotional recovery just as much as my physical or spiritual recovery, I am going to share it.

I had an amazing weekend.  But I also had a completely rubbish weekend.  And unfortunately, the rubbish is what you stew on in the week following.

On Saturday I caught up with a friend, one who I hadn't spoken to in 2 years (almost to the day!).  It was hard for me to contact her, I knew I owed her an apology, but I felt very hard done by, and felt that as I was in the right (or so I told myself), I was better off without her.  I was wrong.  Having coffee with her, I knew that I had missed her, and I am very glad that I have gotten to the point where I could admit my mistakes and apologise.  We both agreed that we were in a really bad place at the time, and that we both made mistakes.  I know I can't jump straight back into the deep friendship I had with her, but I hope over time that we can build back up an even better relationship.

On Sunday, after church, we went and had a picnic at Avoca Lake

We took our own kayaks down, and shared a fun afternoon with two different families.  I was nervous inviting the second family, because I had originally organised the picnic with one of my oldest, dearest friends, but the day was so much fun for everyone.The guys watched the kids on the water, while the ladies chatted and had a child-free (ish) afternoon, it was sublime!

Unfortunately that was the end of the amazing weekend.  That afternoon I received a very toxic text from a different friend, abusing me for a mistake I had made in communication that week, and ending our friendship.  She said some very hurtful things in the message, and I am still floundering to work out where it all came from.  

Then that night, probably because I was so stressed from the text, hubby and I had the argument that had been simmering away for a couple of weeks now.  It was one of those arguments that are completely awful when you're in it, but it actually got things resolved..... I think.  Neither of us were feeling heard by the other, and it was interesting when we worked out that we were both arguing the same issue, but from our own point of view.  I hate that sometimes in marriage, you can be completely convinced that your spouse is trying to hurt you, and that everything they do is a calculated attack on you emotionally.  I wish that when I was in that head-space  that I could remember that he is the one person I know that has always had my back, and that the thought of hurting me is the furthest thing from his mind.  I also wish that I could stop reacting to every little thing, so I will stop making him feel that I am attacking him.

So now I am stuck in the aftermath of the weekend.  I keep stewing on what happened with the toxic texts.   I know that I handled things badly in this situation, but I cannot work out why things have blown up like they have.

My biggest stress in this is I am asking myself, have I been a true reflection of Christ?  I stood up for myself, and my daughter, and refused to have someone dictate how I should behave or allow them to treat us unfairly.  Did I do that with honesty and integrity?  Does being a Christian mean that I have to just lie down and take it?  I really don't think so.  I am so tired of having people accuse me of not being a Christian when I am not willing to let them walk all over me.  Why does being a Christian mean that I am a wimp?  Jesus certainly wasn't a wimp!

So that is the question I am left with, and one I will put to you, my dear readers:

If you are being treated unfairly, how should you respond?  And if it means that the person attacks, what do you do then?

What would Jesus do????????

Today, I am thankful for my pain

I can't say that very often, most days I resent my body, I resent that I have struggled with this pain in varying degrees for the past 20 years.  But today, I am thankful for my pain.

I have a friend who has two angel babies, ones that didn't get to stay on earth and are waiting for her in heaven.  I cannot imagine how that feels, the horror of empty arms, longing to hold the precious miracle you were promised.  Yet even in my complete lack of understanding, the struggles I watch her going through in so many ways echo with mine.

Neither of us know why we are here.  There was no accident that caused this situation.  There are things that we could have done differently, and we will always be plagued with "if only", but we both know that this is the path that God put us on, and He is the only one who knows why.

The pain keeps us both up at night, and haunts us every day.  We try to distract ourselves, to not feel the agony for a brief second, but it is always right there.  Some days we look fantastic, and people assume that we have gotten over it, but that is their wishful thinking, really they are the days that we are lying the best.

We both research, ways that others have coped in our situation, but the problem is no-one has ever lived our *exact* situation, and the solutions are never quite one-size-fits-all.

This is where the similarities end.  I have finally had a scan that shows the problems with the nerves in my legs!!  I truly don't know why I wasn't offered this ultrasound years ago, but I have had it done.  I have a doctor that has told me he is willing to do a peroneal nerve release at the fibular head.  This is the same doctor that did my ulnar nerve release, and I woke from surgery in less pain than when I went under, so I am expecting amazing things from this surgery.  I will have my life back!!

But I pray that I will never forget this pain.

And I feel guilty that I have an end in sight, when my dear friend will live with her loss forever.

So I pray for her.  I pray that the days where the effort to get out of bed in the morning is too great to overcome will become fewer and further between.  I pray that her nights will be filled with more restful sleep, that the darkness will no longer be filled with the loneliness of desperation.  I pray that people will remember her precious babies forever, and stop expecting her to "get over it" and stop giving her shallow platitudes that cannot ever hope to fill the gaping hole in her heart.  And I pray especially that her pain will lessen, that it will be less raw.  But I actually also pray that it will stay with her, that her angel babies will always be a very real part of her.  Because that is what makes her so admirable. 

Today I am thankful for the pain because with it, I have gotten to have a glimpse into her heart, to actually be alongside her and hurt with her.  I know that this is something we are going through together, and that it has made us so much closer than either of us ever imagined.  I just wish that could have happened without hurting so much!!

Starting the clearout

On Saturday we held a Garage Sale.  As part of the plan to move to the Gold Coast, we need to downsize, MAJORLY!!  We have made a dreaming/planning board, and we are working towards moving!

We walked around the house, and tried to work out what was important enough to pay to move it to the Gold Coast, and what we could get rid of beforehand.  Being a list-maker, (and ever-efficient organiser, as my sister calls me in her blog Musings of a Muddled Mum ), I of course made lists

And then I went through my DVDs.....

Anyone who has known me for a while knows I love my DVDs.  I pride myself in having a very large collection, and absolutely love being able to lend people the movies that they have been wanting to see.  So to even think of culling my DVD collection caused major anxiety for me.  But I did it, and we had around 300 DVDs to sell

I did my research on Pinterest, and made sure I knew all the tricks to having a successful Garage Sale.  I made sure that prices were clearly labelled on all the smaller items, with a list on the wall for everyone to see of the prices of the larger things.  

I have had Garage Sales in the past, and barely sold anything, and I spent the day running around answering questions and having extremely rude offers on my precious things....
This time was going to be different.

And I am so happy to say it was.

The people turned up earlier than I advertised, but I expected that.
If people balked at any of the prices, I was able to offer to barter if I felt comfortable.
I had another dear friend selling her beautiful designer clothes, so in the lulls I had great conversations learning more about her.

And we sold our stuff!   There was so much left at the end that I am not really sure what it is that we sold, but the money we counted at the end told a different story.  Happily, the cost of the move ($3-4 thousand!!) is a little more dealt with, less to move and some money towards it.

So now I hope that we get a job really soon, and that I can continue to sell our stuff on Gumtree.  I've got momentum now, and the downsizing is feeling really positive, so hopefully it continues to go this well!