Friday, May 06, 2016

Autumn health rave and Birthdays

I did something I've been putting off. I've really gone downhill in the last 12 months. I knew I was pushing it going out for my birthday when I used up my energy just hurriedly walking to my ride out the front. Due to brain fog I had to come back to the house to get something and then back to the car again and by this time I was walking as slow as.....someone with congestive heart failure....was going to say an 80 year old but that is totally mother is 87 in a couple of weeks and she would not have any idea what walking with heavy legs, heart palpitating, and breathless at such a slow pace that you are embarrassingly obvious is even like.  Anyway I phoned Centacare for domestic help.

I'm already with Centacare for lawn mowing but I filled in all the paper work today for this stuff. I'm pleased to find out that they do one hour blocks instead of a 2 hour minimum. That's easier (and cheaper) for me to tolerate. Just the floors is fine for starters. I can still tolerate being upright so I am not bed bound and I can walk slowly but not for long before I know I am doing damage.  I need the Deralin again.  Toilet and back is about it but I am used to doing everything tiny bits at a time anyway.

Also am now trying to decide about the mobility scooter. Would you believe that it has been on consignment in a shop for 2 years and it still has not sold so I guess I can just bring it back home for a delivery cost (which is nothing to sneeze at) but I remember not using it much you know. When you really need it just to get out of the house, you have to have enough brain power to operate it and be able to weather the elements and have enough energy just to get ready to go out on it and that makes it harder to use than a car. I can still drive so I am seriously considering taking it to park at a nice view on such a nice day but at the same time I know I would be better off just going back to bed or playing my game.   All the storage problems I had with that scooter, do I want that again? Even the hassle of charging it up all the time? I can't fit it in my car so it is no good for going shopping and using it to go shopping might be an outing up to Pelican Waters but do I really need to add all that extra time to something that can take less than half an hour if I had the energy.  Saving energy is the name of this game.  Going into deficit like I did on my birthday is asking for relapse which could become permanently established as the "new normal"   We had April showers a lot and again.  It is either too hot out there or raining. The scooter decision, it can wait.

My brain is still good enough to entertain me; thanks my lucky stars. Take away my brain and I might start getting depressed again. I can live with the forgetfulness but not the inability to engage in conversation or pursue some online reading/research. If I get back there, please someone come and drag me back to Dr Andrew because I don't know where else to go. But first I will have to cash in some Super (again). Better do it now because if I get any further into bed bound knowing me I will just lie there day in and day out because the thought of pushing myself to even get to a doctor is all too much.

I should see if he will treat this chest thing that is NOT mycoplasma pneumoniae according to the traditional tests. I should, I should. I should...but how? And I reckon I must be nearly due for another hi-res CT scan to check on that lung nodule yet no-one has made any attempt to kill off what I reckon is a stealth infection apart from that one short course of antibiotics that gave me profuse watery diarrhoea.  If I was a doctor, I would have given myself more of a chance of seeing at least a reduction in that lung nodule size through the use of steroids if not more antibiotics but if it is still there I will be going to see Andrew even if it kills me just so I can prove it is not a tumour before they start doing biopsies and shit.

I guess what this post is about is acceptance that I need help.  I still don't want it and I really don't want people coming in here and "assessing the situation" and making notes  I did not like it last time.  They watched me disintegrate psychiatrically when the antibiotics crossed the blood-brain barrier last time.  At least I am more aware of what could go wrong now and my treatment will have to be slowed way down at the first sign of anxiety.  But right now, I'm as placid as they come.  I certainly don't sit here worrying about my future but I still have to consider it from time to time which means climbing out of the one-day-at-a-time approach which is relatively comfortable now that I look after myself.  I'm really glad I persevered with obtaining pain meds officially.  I have some measure of comfort for several hours every day but that damn Targin does not last 12 hours like it is supposed to.  Seven maybe?

Something good healthwise happened in April, the migraine things I associate with my back being "out" (which it probably isn't since nothing I can do posture-wise including some convoluted positions, does not seem to help get rid of it even if it shifts the pain/pressure) disappeared all by itself.  The physio appointment made it worse.  So I guess that headache broke the record since it went from before Christmas to early April.  It's not really gone but it is not being provoked simply by moving my arms within my "safe" range of movement.  I am not ready to walk around with my arms above my head though.

All sorts of things happened healthwise in April.  Actually, they haven't stopped happening since April 2015 when I had high blood pressure, hives and high blood sugar.  Quitting egg white, sugar and taking Deralin/Inderal solved those problems but then I had major problems with gastroparesis which I came to recognise required a change of diet which unfortunately does not bode too well for the diabetes so it has been a constant juggling act ever since.  That is pretty typical of my life now.  Juggling the effects of medications and their withdrawals with the state of my gut and head.  Serotonin sensitivity made itself even more obvious the more I took pain killers particularly Tramadol but I was glad to have the Tramadol to act as a quick and dirty relief for the Serotonin withdrawal head zaps on movement so it was a life saver if I forgot to take my anti-depressant and went into withdrawal (within hours).  When I went on the stronger pills I thought it would be a good idea to cut down on the anti-depressant again but they don't make half-strength capsules only a liquid suspension which is fairly unkind to my reflux.  The year had already seen me cut down and make the switch from Effexor to Lovan in an effort to shed some of this weight but it only worked so much in that regard and my pain levels have been much higher on Lovan compared to when I was on Effexor, and the forgetting to take my tablet withdrawals were even worse on Effexor.  Maybe there is an anti-depressant that is somewhere between the two that would suit me better but trial and error is not a fun way to find out.

I've slept a lot of May away so far.  Been in recovery mode which means not doing much more than playing Wartune and attending to the doggie.  And when you are forced to bed, it is nice to have my toes licked by Milo.  I still get the giggles

My 61st birthday was the start of yet another relapse but at least I got out to the RSL for lunch and I met a couple of new people.  Lymies.  I was not feeling very well this time last year in Hervey Bay either but I had several days of holiday before it to wear me out.  This year I have been able to get out way less without suffering a relapse.

For some reason, this year I wanted to be with people but so many did not turn up.  Brenda and Sharon had other things on.  Ange got side-tracked and forgot at the last minute.  Rob piked because of the rain? Shazz did not show.  Karen turned up late and Kerryn from Beerwah just popped in with her hubby to meet me.  She cannot sit so that is why she did not come for the actual lunch.

Cohen had a birthday in April too but Brett made no attempt to include me.  Granted, they only had him for a couple of hours after school but a quick phonecall would have been nice now that skype and facetime calls seem to be too much trouble to organise for Brett.  I sought out Stacey on Facebook so that I could at least find a couple of birthday photos of Cohen.  We have not been on each other's friend list for over a year.  He is 8 years old now.

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