Milestones or goals?

Today hasn't been a good day. I have done next to nothing tangible, except go back to bed for a couple of hours. I did expect the physical effects of such an exertion though. The achievement last night of the one big goal I had - to go to Birmingham to see Steve Hackett - gave me pause for thought overnight and during today.

I bought these tickets over 13 months ago, before I'd even been told I needed a shoulder replacement, and right up until I got the date I never even thought my attendance was in question. Then a certain amount of panic set in as I worked out that it would only be 5 weeks since the op and I wouldn't be driving by that time.

My "fitness" drive in the last couple of weeks was aimed at getting me to Birmingham and back: after all, I'd hardly walked anywhere except up and down stairs for over a month and this period of enforced inactivity had taken its toll. My legs have slimmed down to the point where my leggings are hanging off instead of clinging to the flesh. I suspect that is muscle wastage.

Having not received the OK to drive yet, it would have to be a trip done on public transport. So, walk to the bus stop (0.3 miles), bus to town, bus to train station. New Street station to Symphony hall via the Post Office Vaults and Pieminister. What could possibly go wrong.

The journey between Pieminister and the Symphony Hall was horrendous. I had to sit and rest twice, and lean on a railing once. The world was going grey at one point, a sure sign that I wasn't taking in enough oxygen. I think it took me 20 minutes to walk about 500 yards.

Fantastic concert - but it hurt to applaud! So I resorted to tapping the edge of the terrace box where I was sitting.

The walk back was downhill so it only took me about 20 minutes to walk the 1000 yards, I only stopped once to get my breath and we managed to get an earlier train than the one I had planned. Taxi home, then drink of water and bed.

So what was I thinking about today?

Was this event a milestone - something to mark the passing of time or distance: or a goal - something to aim for? In determining that I was going to this gig come hell or high water, was I setting myself a goal for my recovery? Why is the distinction so important for me? If the gig was a milestone, then all that is needed is to mark the next one in the recovery. But if the gig was a goal, well I have now achieved that goal. Do I now need to set another goal and aim for it?

I have a long history of not setting goals. Or rather, of setting them and not achieving them for one reason or another, usually health-related. So I hesitate to set any goals or targets, call them what you will. I seem to have achieved a fair amount without using the means of setting goals.

I would value your thoughts on this one.

Turning the corner

5 weeks on, and I definitely feel that a corner has been turned.

The physio tells me that the range of movement I have is back to where it was before the op, which is great. I'm doing more and different exercises, including some of the ones I was doing before the op to try and maintain what I had, and it is definitely making a difference.

So much so that I'm going to call into work next Thursday afternoon! My main priority is to sort out the money position, which from what I can see is OK but could have been better if the paying customers hadn't cancelled so often. This has led me to take action and institute a pay-on-booking policy. The Centre needs to increase the inflow of cash if it is to survive.

I've also spent some time today, with Steve's help, sorting out clothing. I can now get back into the extra large polo shirts with help, so that is now what I'm wearing! I've also sorted out some decent clothing to wear outside, so I can see Steve Hackett on Monday in Birmingham without feeling scruffy. Some of the new clothes I bought for this purpose I can see aren't really suitable, being just ponchos rather than batwing tops: at least one I might be able to sew up the side seams of to make it wearable though. Another one just makes me look like a sack, so that can go on Ebay. I bought a one-sleeved top but that just looks daft. There's a very cosy ribbed soft woollen jumper without sleeves, which might be OK for indoors. And I can start to wear bras again! Woo hoo!

I took a walk to the shop round the corner yesterday, and made it without even having to stop and rest at the bench halfway. So this means I can go to the Steve Hackett gig with Steve, which is what I've been aiming for ever since 11th October. I will have to set other milestones after Monday!

Thank you for following my journey this far. There will be more as I get back to work, and as I try and work within my limitations, and also as I try and dream a new future, one in which I can use both arms!

Help: receiving it, asking for it, and making use of it once you have it

I knew I should have asked for help cutting my pork steak.

After a few minutes, and about halfway through the meal, I decided the pain in my shoulder was enough to stop me eating, so I asked Steve if he wanted to finish off the veg for me. "Did you want me to cut things up for you?" he said. Well yes. But actually no I didn't. I wanted to be able to manage a proper adult Sunday dinner for myself, which means cutting meat while holding it still with my left hand, and forking it into my mouth with my left hand. A combination of my struggle with this and the use of the fork in my left hand brought on a muscle spasm. Steve commented he knew he should have cut the meat for me but didn't want to belittle my abilities.

There will be bubble and squeak for lunch tomorrow.

*****

I am so crap at asking for help.

And when I do, I tend to forget that I have the help and just carry on regardless. Take the planning process I went through before the op. I asked my friend Ghis who is a medical herbalist, to go through my supplements with me and work out when I should resume taking what supplements, and what to add. Needless to say the only part of it I'd remembered was the Vitamins E and D3 to start when I get home from hospital! So today, when I was putting up my medications for the week, I noticed a large tub of glucosamine, which jogged my memory that it is now 4 weeks post-op and I should be taking that, and also the Organic Beauty Oil from NYR Organic, which is full of omega compounds and which I've been taking since its release. Both of these will help with my knee and hip joint problems and mean I can walk better, so they will be started tonight.

*****

So why would this be? Well I think it goes back to me being an only child, and learning at an extremely early age that I had to sort things out for myself, that I couldn't trust my parents to help me and that if I needed their help, it was more often than not delivered with raised voices or slaps. I think it goes back to this "self-settling" nonsense that was practised when I was a baby: this is where you leave your crying child until they stop crying. One of my earliest memories was having a "tantrum", and being locked in the living room. I vividly remember sitting there, and thinking "well that's it, I'll never see my mom again" and crying even louder and harder. At that point I decided that, if my mother wasn't going to be any help to me when I couldn't stop crying, I would call on whatever help was available - and I'm pretty sure that was when my "invisible friends" started to materialise.

I created my own world - Christinonia - where I was ruler, full of people who actually liked me, enjoyed my company, and talked to me as if I was a friend. They did what I asked: if I needed their help and support, I got it. Even though nobody else could see them, I certainly could. (This ability did fade as I got older) Of course, now I know who they are - they are my spirit family and, as I once said to a medium who visited me, I keep a full house. Even now, I talk to them and they do really talk back to me. However, it took some time before I sorted the good voices - the ones who were always supportive - from the bad voices, who at their worst advised me to kill myself as I had made a real cock up of my life (aged 15). Sometimes they reappear, but now I know them and I remind myself that I'm only hearing them because I'm tired and I need to sleep

So, if I have nothing to take away from this episode of enforced reflection, it is that if I need help, I just need to ask and it will arrive. Of course, I then have to remember that I asked and it is there!

My recalcitrant body

I am not a fan of my body at the moment.

Yes there is rehab to do, and I am doing it to the best of my ability. 3 lots of exercises 3 times a day, with others from previous weeks from time to time, and some of the other exercises that I used to do when my other shoulder needed work.

I've decided too, that it is time for me to get my legs back in working order. So I've downloaded the Strava app and you are welcome to buddy up with me on there (or whatever you call it). On Thursday I walked to the end of the road and back, and on Friday I walked to the bus stop, where there is a bench. I had about two minutes rest and then walked back.

Oh that was so hard! I try and monitor my posture, and I catch myself stooping and walking like a figure 2 or something - bending forwards with my bum sticking out! I am so self-conscious! And my hips are so short - I mean they need to be more flexible - and my knees hurt so much...I tried to use both my arms when walking, and when I got home my bad arm really hurt because of that. And it was soooo cold! But I have to do it. I have got to walk otherwise (a) I won't be able to go to the Steve Hackett gig on the 18th in Birmingham, and (b) I have got to go to the Centre about that time to sort out the money, and I will need to walk as I won't be able to drive by then. Plus (c) there are 16 stairs at the Centre and at the moment I won't be able to manage them.

The other thing I've noticed is that my boobs are really lopsided now. The muscle tone on the left side is ridiculously low. The best thing in the last few days is that I've found out some old camisole tops with a hidden bra, and most of them actually fit (if I don't do the bra up that is!) so I can get some support now. I reckon I will be able to get back into the front-loading bras next monthl.

So if you feel like it, some messages of support wouldn't go amiss at this time. Thank you.

How much has this cost me so far?

All this being incapacitated has taken its toll on our savings, not to mention my health. So that I could continue working, for example, we had to change the car for an automatic, and that's a £14,000 loan for starters. Before then, we changed the double and the single bed. Now we had to change the double bed, it was over 10 years old, and I decided that, as I needed to move into the spare room after I'd come out of hospital, I'd replace the single bed. It had been bought for Dad to return home to during his terminal illness, but he never used it so I had it since 2004 as our spare bed. I think it had been slept in about a dozen times, but it was an orthopaedic one and sooooo hard. So two beds cost us about £1100 (I don't have the exact amount here). On the day I came home from hospital, Steve informed me the oven had stopped working while I was away, and as it was 20 years old I decided we'd get another one rather than get it fixed. Its replacement cost about £500 in round figures.

Now we get to the clothing. I needed to replace my "normal" bras with front-fastening ones last year, call that about £100 as bras in my size don't come cheap! Then I had to shell out on batwing jumpers and poncho style clothes for work, as I couldn't actually get my arm through sleeves this summer. Even getting everything from Ebay, I'd say that must have been £100.

And don't mention the loss of income for me and the Centre. I think because I haven't been able to contribute what was in my cash flow forecast with treatments and training, since the summer the Centre has lost at least £2000, which is having to come out of my personal resources if I want to keep it going - which I do, if only to fulfil the commitments I've taken on there. If I don't get back to work after Christmas, it will continue to lose about £500 a month.

The only bright spark on the horizon is that all this incapacity has meant I am eligible for PIP, which finally kicked in this month, and I get about £300 a month. No prizes for guessing where that is going!

So don't let anyone tell you that incapacity is easily managed. Yes it is, but only if you have a goodly amount in the bank. I did a crowdfunder to try and raise money for my convalescence, as you can see. I did raise some money and for that I will be eternally grateful, but that paid for the new clothing and will run out this month. I haven't spent it on what I wanted to, which was a week in a convalescence home (quoted at £1100 in the end as it fell in the school holiday), nor have I used it to fund treatments to speed my recovery (quoted at £450): it is going to fill the hole in the receipts at the Amethyst Centre I'm afraid. I do have an understanding landlord but I have to pay him £1100 this month, which is coming from... a bank loan.

So it's all very frightening if, like me, you don't like to go into debt. But sometimes you have to, and this is one of them.

An excellent night!

Well I think I had the best night's sleep last night since I had the op!

I turned in about 10.30 last night and snuggled down - minus the sling, but with it beside me just in case - soon to be joined by Freddy for his nighttime snuggle.

I awoke with Freddy still in situ on my chest and thought "I need the loo and a tablet" so I put the light on. 5.30am! I honestly can't remember the last time I had 7 hours sleep straight through!

How did I create such a wonderful sleep? Well firstly the sling wasn't on. I found it so restrictive and sometimes I couldn't wear the cross-chest strap which kept the arm in place across my body so I'd undo that one. Secondly, because I wasn't wearing the sling, I removed the wedge pillow which was keeping me in a more upright position to support the  upper arm. I felt the relief on my back as soon as I lay down. I've also been given the go ahead to lie on my good side, but I don't think I did. I can't have done otherwise I'd have tipped Freddy off.

So now I can start to accelerate the recovery. I have the next lot of exercises to do 3 times a day, which I am doing. If the weather improves I will start a walking programme as I need to get my legs back in working order so that I can  use my bus pass to get around more. I am fortunate to live in a grid-plan village, and I have several walking routes planned. It's not quite flat, the village rises from the other end to where I live by about 80 feet (I think), so that will help the cardio part too.

Another part of the recovery process will be to do more cooking. I've restricted myself to putting things in the oven, but today I'm going to do a beef stew with vegetables, so I need to peel and chop the veg. I will take my time.

A curate's egg of a day

On the plus side:

• I had a bath (well shower really) and washed my hair for the first time in nearly a month.
• I found out some camisole tops with a sort of bra in them which I haven't worn for years as they are technically too small for me. To my amazement, one fitted, so I am actually sitting comfortably with my boobs supported for the first time in nearly a month.
• The physio thinks I'm doing really well and my scar is still pretty.
• She gave me the go ahead to do without the sling! Woo hoo!

On the minus side:

• The physio said I probably won't be driving until December or 8 weeks after the op
• And I probably won't be able to go back to work until February, or 14 weeks after the op at least. This is because, basically I should have had the op in Spring, or I should have stopped working about then to try and preserve my shoulder, but because I still worked and tried to push myself until September, I need to try and recover to the point where I was in Spring before I get back to work, if you see what I mean.

But the worst thing was...

Our local ex-MP (Con) paid us a visit. Personally I'm surprised he managed to extricate his head from Johnson's arse in time to start campaigning today. Luckily I realised who he was, shook my head through the glazed window in the porch and went back in...

I was warned

I was warned that the anaesthetic would have effects later, and over the last few days I've found this out.

I did think that I was going down with something, and though my wound area felt warm there was no pain or itching. This morning I felt quite ill so I went back to bed about 9am, and felt better when I got up. I had a light lunch of scrambled egg and cheese, and felt really sick and ill.

I called the GP and they asked me to go in tomorrow morning at 9.30. Now I was reluctant to do that as I'm at the hospital physio for noon and the last thing I need is to hang around there for a couple of hours, especially if I'm feeling ill. So I said I'd monitor it and if I needed to, I'd call in the morning for an appointment.

I went back to bed this afternoon, accompanied by Dr Freddy Van Cat, and I got up a couple of hours later. I do feel better now, so perhaps it's an anaesthetic flashback and nothing more.

Adaptive clothing

I would like to thank my friend Irena for adapting some Tshirts for me. I found this picture on Pinterest:

It's a short sleeved shirt which has been slit up the side of the affected arm from bottom to the end of the arm seam, and in this instance taped press studs have been sewn on.

When Irena and I discussed how we could do this, she suggested Velcro instead of press studs, so that's what we did. 5 of my old XL polo shirts were adapted for me to wear while I had to wear this 24 hours a day:

I took a couple of them into hospital and the nurses were quite impressed with them, as it meant I didn't actually need to remove the sling, I could just tuck the front of the shirt under the straps and fasten it under my arm.

These days I do remove the sling, because I have exercises to do without the sling, and also because the sling is nylon and very sweaty, so we have cut up an old sheet to make liners which are far more comfortable. If I could actually sew, I'd sew these up so I didn't have to  tie them in place - but by the time I will be able to sew, I won't need the sling or the liners!

As the polo shirts are short-sleeved, and it is autumn/winter, I need to cover my arms up so I have a couple of ponchos I can pull on. However, the velcro of the Tshirt catches on the crochet poncho and opens up when I pull the poncho over my head. So I have a really large pashmina which can do the job. It's slightly easier to manage. I have several lovely jumpers/ponchos that I can pull on, but there's always something wrong with them: my favourite has an Aztec type pattern on but is short-sleeved, but there are others which are either itchy or too restrictive to go over the sling.

I can cope adequately with my bottom clothing, but knickers can be quite awkward - so I don't tend to wear them unless I'm going out! That old saying from my mother about always wearing clean  underwear isn't leaving my head in a hurry!

But the one item of clothing that I miss being able to wear is a bra. You see, I'm a big girl, and the weight of the boobs really pulls on my deltoid muscles, and that means that my neck and shoulders are stiff and sore. Hopefully I'll be able to wear a front fastening bra in the next week after the physio appointment. I have a multiway bra, which means the straps are detachable so I can just wear one strap and at least I can get some support. I also have a bra which wraps around, which I haven't dared try yet.

I do have some work-type clothing which I can wear when I call in. I am due to go to the Cacao ceremony at the Centre on Saturday, and I guess I can wear my lovely sleeved purple poncho then. I also have a one-sleeved black crepe top but I'm not convinced I want to expose my scar to the world!

Into week 4 and...

I NEED A BATH!

I can have a shower, and I can stand in a bath with water in and pour water over me, but it really isn't the same.

I can't really have a luxurious soak until the scar has closed up completely, and it won't do that until the swelling goes down. I could lie down and not get the scar wet, but then I have to get out of the bath, which is a problem with one working arm. Steve has got me out of the bath before when my legs stopped working on me, but I have to wait for the bath to empty and it's a bit cold, plus I don't want to knacker him!

I really need to wash my hair. I haven't washed it for 3 whole weeks, and while my hair is OK, my scalp is driving me nuts. If I went to one of the local hairdressers I couldn't lie back at the sink as it would stretch the scar tissue too much. As I only have one working arm I can't reach the whole of my head anyway. I'd have to ask Steve to wash it for me, and I'm not sure I could handle that, he is a bit strong for me!

So I shall just have to have fantasies of a luxurious long soak in the beautiful Seaweed and Arnica bath salts that I have bought to heal the wounds, of washing my hair and rinsing it with the shower head, of smelling beautiful and sweet instead of rather whiffy...

and hope that I don't have to go anywhere much for a while!

The Geldof effect

Which isn't what you think it is.

About 10 years ago, I went to a business expo at the Ricoh arena where Sir Bob Geldof spoke. Whatever you think of him, he's a really interesting and engaging speaker. One of the things he said was that he had been told, at one of his businesses, that he wasn't welcome any more because he just got in the way, that they really knew what they were doing and didn't actually need his input!

Now I find myself sidelined from my business, which I set up, which I love as a child - well it is my baby! - and which I know how to work with one hand tied behind my back. (Literally.) I am outside looking in. I have some really capable people there - Janet my business partner, and Lindsey who is handling the course side of things, and the volunteers who are incredible - but I find myself now itching to get back. I am compos mentis, I can type, and I get involved.

Well I needn't.

The place runs really well without me. In fact, my meddling has just provoked chaos and discord, so now hear this: I make a pact with myself to do something different for the next 9 weeks. And who knows, maybe I can use this time to expand the business into a new premises as we've been wanting for a good 2 years now. Where I think I am still needed is bringing in new room hirers and developing the training provision, and ensuring the finances are kept on an even keel or growing.

Maybe I won't go back...