(Im)patience, physiotherapy and turning t-h-i-r-t-y

Last week I turned 30. In all honesty, it wasn't really a great day - not that I had high expectations with my sling still permanently attached, too many drugs to combine (safely) with any alcoholic drinks, and the inability to stand or sit for very long without almost fainting.... So celebrations are on hold until later this year.  Until then I think I will continue to be 29 (and 12 months).


Seriously, I don't feel 30. Thirty years is such a long time! When I was younger 30 seemed like a proper grown up, time to have it all pulled together and life mapped out.  I wonder if anyone ever gets there or if it just seems like it when you are younger....  Turning 30 seems to  demand a real review of life-so-far and, for me, I'm really not where I thought I would be.  Looking back over the last seven years is difficult and it's so unreal sometimes to consider how long Lyme affected me so severely. It's so easy to think about how rubbish it's been and to wish things had been different.  But that doesn't change anything, of course, so looking forward is far more important.  Mum read something to me out a magazine article, an interview with the actress Julianna Margulies in which she said when she turned 30 her mother said, "honey I wish I knew how young I was when I was 60!" So I guess it really is all about perspective! And I think the best thing my Mum said to me this week was, "Gail, you should be delighted to leave your twenties." Maybe she's right... here's to a much better decade!


I did have a fantastic cake - all Mum's creativity:

On Thursday I started post-op physiotherapy for my shoulder. I was really worried about it.  Things are improving, the pain is less, but it's still severe. At the moment sitting unsupported or standing still makes me feel nauseous and dizzy and as if I am going to faint.  Moving my shoulder at all makes me feel worse - things start to go black at the edge of my vision, I can only see straight ahead and I have to close my eyes and concentrate really hard to stop myself blacking out.  This is partly from pain and partly coming from a couple of muscles that attach from the scapula into the back of the head.  Because they haven't been working and they are really weak they are causing these symptoms when they contract.  This week I am also allowed to take my sling off.  They told me I would start to feel ready for this and I would feel as if I don't need it anymore.... nope! Not yet.  At the moment my arm feels like a dead weight when I take the sling off.  I really struggle to move it at all and my hand swells up in minutes.


So I was feeling a bit concerned that I wasn't progressing quickly enough and I thought physio would be a real struggle.  Actually, it made me feel a lot better (not the exercise bit!).  Apparently patience is required! My physio, Angelo, is fantastic.  He had spoken at length with the clinic in Kentucky, he had the therapy protocol from them, and most importantly I was exactly what he was expecting.  He really reiterated the point that I've had major shoulder surgery and then a long period of immobilization and this is all going to happen really really slowly.  Proceed with caution, it seems.  For the first few weeks I have teeny tiny movements and a bit of teeny tiny passive movement (where the therapist moves my shoulder, I do not engage the muscles).  It is important that we don't do anything to damage the repair and tear the muscles off the bone again...!!!  In saying that, even the teeny tiny movements made me feel dizzy and the blackness started to creep in, but I didn't faint.  In terms of taking the sling off, I have to try to increase the time I can keep it off (unsupported) by a few minutes each day.  I managed 20 minutes twice today. Baby steps....


Everyone at the physiotherapy place was really impressed with my scar - it looks great now, it is healing really well.  They reckoned it looks like a plastic surgeon did it - and I guess they see a lot of scars.  This is my latest photo:

After all my reflecting this week, and for certain friends (you know who you are!) I think this is the perfect quote: 

"Life is what happens to you when you're busy making other plans."

               ~  John Lennon

Things I have learned from having shoulder surgery

1. Your shoulder is involved in virtually every movement you make - head, neck, back, arm, core - everything. Ok... I really realised this 9 months ago when I got the injury but these past 3 weeks have made this excruciatingly obvious. Things like getting up from a chair (or the toilet!), going up/down stairs, or bending to pick something up are all little daily challenges. However, I am developing new skills to help out. I can now pick up a hairbrush from the floor with my toes... note, dropping things is not good! I can also put off a light switch with my foot, tie knots with my teeth, and plié (ballet style) to bend, sit, or stand up.



2. Buttons, zips, laces & drawstrings on trousers are a bad idea. Tight fitting leggings do not work either as pulling is impossible and attempts to wriggle or shimmy out of them are even more impossible. Loose sweatpants with an elasticated waist are the best solution. Underwear - not important!



3. Also currently unimportant - showering and hair washing! With my super sling/brace/pillow permanent attachment showering is impossible. Baby wipes are fantastic. I do not smell!



4. Eventually hair washing becomes a necessity. After much discussion and consideration, I managed this with a high stool, shower head attachment, kitchen sink and my mum! And LOTS of towels (I cannot bend or hunch). To avoid repeating this mess too often, Tresseme has a great dry shampoo. And I love hats.



5. Pillows are my favourite thing at the moment. I have 13 on my bed holding me in place while I sleep since I still can't lie flat. I take them in the car with me. I took them into restaurants pre-surgery to support my arm. I even had two full-size pillows on the flight over here before xmas... hopefully by the time I fly home that won't be necessary!



6. Borrowing the recliner from a friend was such a good idea. The hospital recommended sleeping on one at first and some of our friends organised this and put it in the house while we were in Kentucky. I am so grateful for that! For 2 weeks I couldn't get into bed (even now I have a stepstool beside the bed to climb in. Very posh-Victorian-lady-style! Although maybe not so glam with a metal stepping stool...) The recliner is still the only place I can sit comfortably during the day... with 5 pillows.



7. Shoes and socks are impossible. I can't reach my feet, never mind pull on a sock or shoe! I love my Ugg slippers.



8. Shoulder surgery hurts. Funny people keep telling me that NOW. (Not that I really had a choice in the matter, I needed fixed.) My Dad said his rotator cuff surgery was worse than his hip surgery. The nurse said this procedure is one of the most painful the orthopaedic surgery centre deals with. The receptionist at my doctor's surgery (who had shoulder surgery) said I won't be glad I did it until after about 4 months. My physio says the shoulder is the most complex joint and the worst to injure. So it still hurts. But it's pretty important, so getting it fixed and doing the therapy is worth it.... I hope!!



9. I can't survive without my Mum. She is fantastic, brilliant, amazing, super, awesome, terrific and just fan-dabby-dozy. But I knew all that anyway.

Mum & me in Kentucky the day before my surgery

18 Staples

Two weeks ago today I had my surgery.  The whole thing seems rather surreal - that we drove 600 miles, I had my shoulder fixed, then we drove 600 miles back.  It just seems a bit like a strange dream.  

I got my staples removed on Friday - 18 of them and I think once it heals I am going to have a pretty impressive scar!  I'm not really sure about posting this photo... Mum took it for me so I could see it... but there's a bit of me feels it is worth showing off!! So here is my incision before the staples were removed:

I am told it looks good and I am healing nicely.  I think it's a little Frankenstein-esque in this photo so I will just take their word for it!

One week later...

One full week has now passed since my surgery and I am now on to the instructions they gave me to follow for 3 weeks starting after 7th March.  This basically still involves doing nothing with a couple of added instructions - one shoulder exercise and icing 4 times a day for 20-30 minutes instead of 12 times a day.  The shoulder exercise is a very small shoulder retraction (gently pulling my shoulder blades together) 60 times a day. I have still to wear the sling at all times, including night time.  No texting, video games or other things that require repetitive actions with either hand, nothing with my left (good) hand out in front of me and limit computer use to 10 minutes every hour.  SUGGESTIONS PLEASE....!!! Any ideas what I can do that fit within those guidelines would be welcome!! So far, watching TV and reading are all we've come up with. Usually I'm quite happy to read for hours on end, but I am finding all the meds make me a bit sleepy and I'm reading the same page over and over. And there is only so much TV I can take!! 


It's been a pretty quiet few days.  I am feeling little improvements each day although within each day I am having good spells and bad spells.  The pain is still pretty bad but not unbearable, and I am getting more relief from my painkillers now.  I have been sleeping lots which is good - lots of healing time!  I was told sleeping on a recliner would be more comfortable so we borrowed one with an electronic control from a friend and it has been an absolute life saver.  I can't get in or out of bed (and actually am struggling with normal chairs right now too, it's incredible what muscles we use without realising!) and if I lie down, because of my sling, my arm sticks straight up in the air and all the blood drains from my hand.  So it looks like I am stuck sleeping on the recliner in the living room for a month. Oh well, one week down...

                                      Me, my recliner and my ice-pump machine!




I get my staples out on Friday morning and I can have a shower after that... although I'm not supposed to take the sling off at all so I'm not really sure how that's going to work... Figuring out some way to wash my hair is becoming a priority!




Just to make sure they got the right shoulder!!

Back home

I'm never quite sure where "home" refers to anymore but wherever might be considered home geographically, home is definitely where your family is.  And right now, I certainly wouldn't be coping without my wonderful parents.


We made the journey back from Kentucky yesterday with only one quick stop.  At my post-op appointment Dr K gave me a strong anti-nausea drug that just made me sleep in the car.  Even with all the drugs the journey was pretty uncomfortable but pressing on and getting home was definitely the best thing to do.


The post-op appointment was fine.  I looked a complete mess - still feeling awful and in loads of pain - and when I went into the surgery three different people offered me a wheelchair (I must have really looked dreadful!) and when I was shown into the consultation room the physician's assistant said to Dr K, 'what did you do to this poor girl' and he said, 'I did a damn good job on her!' Good to know he was pleased!!


He told me that usually when he does this surgery the trapezius has detached at the scapular spine (the horizontal sticky-out bit near the top of the shoulder blade on the back) and if he gives the muscle a tug with his forceps there is still some resistance where it is still attached on the side of the scapula (medial border) but when he tugged on mine the whole thing was flapping and not attached at all.  He drilled six pairs of holes - five pairs along the border of the scapula and one pair at the scapular spine and stitched the rhomboids and trapezius muscles through these holes.  He also has to make sure the tension on the muscles is right so they heal properly and then work properly with the other side.  This means there is a lot of tension and pulling (ie pain) on all the other muscles that attach to the scapula (18 of them!) that have all been in the wrong place for eight months now.


Today has been a little bit better which is really encouraging as it is definitely an indication things are going to improve relatively quickly.  I think the most difficult thing is going to be doing nothing! I have been told the next four weeks are all about resting and healing.  Instructions actually say no texting, no video games (even with my good arm) and limit my computer use to 10 minutes every hour....  need to stop typing now then! I have to keep my sling on for a month, including sleeping in it.  This is the sling I have:



I've been told I will grow to hate it!! 


I am really appreciative of all my fantastic friends and everyone's messages, texts, emails of support, they have all been really helpful in cheering me up. Today a friend sent me a quote for my blog and it is perfect for maintaining optimism and keeping perspective today:  


"Never to suffer would never to have been blessed"

         ~  Edgar Allan Poe