Week commencing Monday May 15th 2023               WEEK3

MON 15th AM/PM:  Blood pressure : AM : 171 / 108 / 82

PM 184 / 102 / 90 GLUCOSE 6.2mmlo/l  URINE : OK no concerns.

MYOPHASIA : NECK: 8 ARMS : 8 HANDS : 6 Puffy, stiff, clicky. Chest : OK
LEGS / HIPS etc  Left TH (Thigh) 3 remains painful and loss of sensation with apparent nerve / muscle damage.
RIGHT thigh : 7 less discomfort and more responsive. COLDER to the touch BUT warmer than the LEFT thigh. VERY light pain / discomfort.
HIPS : PELVIS : LOWER LUMBAR region : Slight discomfort but overall manageable.

Knees and around them is normally painful BUT some more discomfort seems present especially when moving around.

Usual drop after a light breakfast, of body temperature. More severe drop after main meal later in the day. Some necessary attention to providing extra body heat to the abdomen required. I also find that covering the top of the head with a ‘wooly hat’ appears to help restore body temperature balance a little faster.

Overall : Well being : 7 (highest is better/10) Visual Acuity : 9  Cognitive :  10  Mobility : 7   Strength : 8  GUT : N 

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I’m going to change the way I take my food intake re meals as I want to reduce the impairment caused to my general mobility due to the sudden drop in body temperature, the cold clammy sweat dripping across my body. So breakfast will be as normal BUT a light snack mid day AND a main meal about 7 PM which will enable me to apply extra heat as needed AND as it will be much later in the day ? I can rest easy re MOBILITY etc. ? Let’s see how that works. 

I have NOT tried a SALAD meal ie a COLD meal which will be interesting to see if I get the sudden plummeting in body temperature after that??

The two lumps at the back of both my ears remain, little change there AND as they are fairly hard to the touch Appear to be more of a ‘fibrous’ mass. Will be interesting to see what they are and of course ‘biopsy’??

I am also tending to get ‘headaches’ which I can honestly say I DID NOT in the past tend to suffer with. Albeit not so severe BUT there.

Its time to have a very short hair cut AND especially around the ears to expose those lumps etc for photographing etc

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TUES 16th May : AM / PM

Blood pressure is being carefully watched : AM today 179 / 111 / 92  That is a little higher than I like it to be.. for an ‘at home’ test.

NOW I need to expand on that re WHERE the blood pressure is taken because .. Most of the ‘at the hospital’ tests can be as high as 220 / 120 / 100  ! Though I do emphasize to the nurses et that I do NOT panic when they kind of jaw open light gasp and the monitor has its moment of that BEEEEEEEEEEP ...

I’ve for years now had HIGH BLOOD PRESSURE. FACT. HOWEVER:

The GP did put me on AMIILODIPINE to help keep that under control. NOW, since my unfolding nightmare I have been taken OFF that and put on Ramipril 2.5mgs BD (Twice daily)

I will do an update page on medication that I am and have taken including the dreaded ‘ATORVASTATIN’.

but BACK to the blood pressure :

I DO take my readings during the daytime as well as what I call ‘first light’ and ‘end of day’ testing. SO, generally I have a pretty good idea of what is going on. OF course MEDICATION such as ‘steroids’ etc WILL affect blood pressure readings. WHAT I look for are symptoms that are irregular or compromising AND raise the blood pressure accordingly?

PM blood pressure ? 184 / 102 / 90 The SYS is still a little higher than I like it BUT at least the DIASTOLIC is more ‘normal’ range for me.. WHICH incidentally is generally ‘at home’ on average about 160 / 100 / 85 

OVERALL. Today in general most tests are of little concern. Blood sugar within the 5 - 7mmmol range. Clinistix testing OK,

NO change really re the lower body and if you refer back to earlier reports re that, about the same BUT I have to emphasize that the NUMBNESS has NOT CHANGED. THAT is important to remember because we are still waiting on the results re the ‘MUSCLE BIOPSY’. What is going on beneath the skin so to speak is anybodys guess and GUESS at this moment in time; is about the sum of it all.

MOBILITY: I have and my recent reviews tend to reflect on this, continued to push re exercising to improve my upper and lower body strength.

DO remember however that the muscle and body mass lost has resulted in serious restrictions on what I can achieve even if the mind is willing, quite often  can suffer afterwards AND SUFFER is about right re that.

Searing pain across the neck, shoulders, radiating down the arms to the hands, spine from top to lower back; spasms not uncommon. Bones click and that includes the lower legs where the knees can be painful AND moreso than the normal almost continuous aching there (Lateral and medial muscles in particular). Some CRAMP and spasms re the ankles are another nuisance as I am more than aware I do NOT want to stumble or fall because my ankles suddenly give way AND yes in the past when I had a MAJOR fall that to reflect on the comment previously made.. left me looking as though I had done a couple of rounds with ‘Mike Tyson’..

NO changes re sudden drop in body temp after eating food.. if anything I am noticing that coming on faster than before.. I have a couple of work arounds that help me after to recover a little quicker.

BUT the realisation as to how debilitating that can be hits home hard. I’m cursed if I attempt to socialise and EAT out.. cos oh yes.. afterwards here comes the pouring cold clammy sweat..most unpleasant.

STILL on the ‘to do’ list:

1. Haircut and a few ‘close shaves’.. especially around those lumps behind the ears.. It will also be interesting to see if any other changes have taken place re the my head...

2. Photographs et  Those ‘lumps’ are abnormal and I need for those who need to see them re HOW my situation is changing etc.

3. I will post medication iisting, as this is also another important aspect to all of this.

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WED 17th AM/PM:  Blood pressure : AM :183 / 115 / 90

PM 166 / 97 /90 GLUCOSE 6.2mmlo/l  URINE : OK no concerns. ___________________________

Almost the same as TUES : little changes overall. I DID manage to get my hair cut back and that included the sides where those ‘lumps’ are. Now I have to get around to photos etc IT will be interesting to see if they get bigger or ?
Interesting to observe that the temperature on the TOP of my head is like most of my body, COLD to the touch. I’m more and more convinced that the cardio vascular system is part of that problem.
It’s crazy but true that wearing a ‘cap’ over the top of my head when I get one of my sweat issues appears to help me in reducing the discomfort ?

Currently some acidity re my gastric system so am carefully noting how that develops.

MOBILITY : I do try as much as possible to keep moving AND attempting to do the basics around me re normality. Some aspects of that remain too problematic such as moving things, reaching up to cupboards and taking things from them etc ALSO I have had to change items such as plates that I put food on et as the original ones have proven a little dangerous re weight when it comes to carrying  a completed meal on them ?! I’ve managed to source some lighter ones, I’m reluctant to switch to plastic etc Cups and mugs.. generally not too much of a problem AND ONLY if I am having sporadic issues re my mobility where carrying anything is dangerous with the risk of stumbling and or falling.

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THURS 18th AM/PM:  Blood pressure : AM :175 /106 /80

PM 174 /98 / 89 GLUCOSE 5.7mmlo/l  URINE : OK no concerns. ___________________________

Body temperature - running a little warmer today. Less of the extreme drop which was a pleasant surprise. HOWEVER. it still is an issue.
Mobility : Some increased weakness in the legs with standing / walking today, having to take extra care NOT to stumble and fall. I almost at one instance caught up in a sudden spasm ended up stumbling forward and fortunately managed to grab onto a work top to stop the fall. This kind of incident has gotten rarer so it did come as a bit of a shock that it still can happen.

Otherwise no real changes AND usual aches, pains and issues remain. I continue to be somewhat concerned re the left thigh and the FACT that it is so numb with something definitely happening beneath the skin re muscles / ligaments / tissue in general ??
Lower leg cramps and tingling also observed AND somewhat heightened re discomfort in general.

Checking my feet etc there are NO discernible issues re colour, warmth, discoloration, rash, extra growth / calluses . nail problems.

Marked wastage re flesh and muscle around the ankles is clearly visible but remains more or less the same as previous days etc

Flexing of my feet OUTwards EXTENSION or FLEXION is OK but noticeable discomfort re tightness of the muscle / tendons et Likewise CONTRACTION pulling the feet inwards is about the same level of discomfort observed.

I have to add that one of the most peculiar aspects of my main issues ie the diagnosed POLYMYOSITIS? is the FACT that with my feet flat in front of me ie lying on a couch or bed et I cannot LIFT MY FEET straight up.. FACT.
The motor neurone message appears to be missing ..? I can pull the feet towards me ie bend my knees and move my legs ALSO move my legs side to side etc BUT NOT straight up!!

Before anyone thinks this is psychological think again !! It’s a trait that is not a major issue BUT definitely peculiar.

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FRI 19th AM/PM:  Blood pressure : AM 175 /106 /80

PM 178 /101 / 92 GLUCOSE 6.4mmlo/l  URINE : OK no concerns. ___________________________

Body temperature - warmer than usual. Did drop SLIGHTLY, but not as dramatic as previously after breakfast.
Managed about a 1/2 mile round trip from home to a local store. NOTE there and back taking a lot of care to be more than aware of the surface of the walkway - pavement as it was very uneven, easy to trip up; fall.

That, is another consideration for me, that cannot be ignored. In certain weather conditions such as ice, heavy rain et winds; I am far more vulnerable.

After the ‘hair cut’ the top of my head remains colder to the touch and even out in the warm sunshine, I had to wear a head covering. Probably a wise choice anyway due to the ultra V rays etc

I would also add how the ‘landscape’ can change from a previous trip to a certain place etc and that also can create problems when you arrive at your destination and have other issues to deal with. How about steps that were not there before? OR opening non electric doors that to most are not a problem but ?? When you have upper body weakness and can hardly pull on anything??

Which leads me onto the subject of being disabled and realizing how many ‘obstacles’ and hinderances there are. The activities of those around you can also add to that. It is in fairness NOT deliberate by the bulk of those I encounter. Nor is it some who deliberately are problematic but more ‘who they are’ per sae.

Using public transport and short trips out. Sometimes can be seriously not so good. Getting on and off ‘public’ transport, when you have a raised platform?? When ie that transport pulls up and is several feet away from the edge ot the walk way / pavement? Try that in heavy rain being careful NOT to stumble off the walk way /pavement onto the road before attempting to pull yourself up onto that raised platform?

PM : Light meal appears to help me a little re body temperature drop. Less time taken to recover. Evening meal was also a little lighter than normal which helped me re that.

After the trip out. Some weakness in the legs re mobility so had to take it easy.

My neck today, has been pretty savage re the pain and discomfort with very limited movement, clicking, crunching and borderline nausea if I don’t take added measures to seriously limit even to normal levels of rotation etc

Wearing a neck collar is not recommended as it gives support BUT can also weaken whatever muscles / ligaments are in situ.

CLOTHING : I have had no choice but to dress using several LIGHT layers. Some of the heavier jackets that I could wear before with ease are now impossible to wear due to their weight!

Overall : Friday has not been without incident BUT the trip out DID create its own additional problems. My neck playing up added to that BUT I did achieve what I set out to do re the main reason for my continuing to fight back both mentally AND physically.

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Sat / Sun 20th -  21st May 2023

Overall. Working on getting various items together for more camera work AND taking my time is non negotiable. I realize just how limited I am physically in simple tasks let alone the more demanding ones.

Blood pressure has been problematic. I did have to take a ‘booster dose’ of my Ramipril 2.5mgs anti hypertensive meds at 2am Sunday morning when I discovered that the BP over the last 18 hours had not been good.

181/108 / 77  ------- 197 / 118 / 79  ------- 182 / 116 /78 All of those from resting / sleeping. Woken by sudden APNOEA which has been a problem for me in the past. Hence I decided to do more tests and the realization that my BP was still not behaving itself.

Eventually at about 6am managed to get it down to a more acceptable level that continued re Sunday in general 178 / 99 / 82 It was interesting to see how the results spanned out over that period. I submit regular readings on a monthly basis to my consultant AND GP. The contrast between at home readings AND the so called ‘white coat syndrome’ figures can be quite a startling contrast.

I did manage to get out and achieve some free ultra violet emissions along with the ususal air particulites. I always remember when I was in London talking to a motorcycle courier who was wearing a mask? He took off the mask and showed me the filter - it was almost BLACK. He regularly changed it; DAILY minimum. When I was working at Kings College in London I never liked the peculiar smell that London always had let alone that distinct pungent tube AND main line rail carriage stench.

Mobility was my usual struggle to keep upright without stumbling or falling. The shop allowed me to top up on some much needed fruit and veg; ah VITAMINS.

May not seem much to millions who do not have the issues that so many disabled do have re even a basic shopping trip BUT believe me; it is and can be a major challenge. Queuing at the end of your ‘shop’ when you are unsteady on your feet and thank heavens for being able to lean onto the trolley for some support? is another aspect which can have you taking serious note of how you are feeling, moving, able to adapt to that.

Which leads me to the curse of the ‘self service’ tills. With some stores operating a limited number of operator tills with an ever increasing number of self service? Means queues get even longer AND yes one might argue that there are staff who can help you? Uhh seldom ever unless you press home the request to have someone do it for you which of course can end up with someone who does not SEE a disability NOR perceive someone who looks capable as being INCAPABLE to a greater or lesser degree? Should I be wearing a flashing neon sign ‘Hey I am disabled.’??

If you thought seeing those impatient, arrogant, self centered, bump into you or push you et individuals were a moment you swear to yourself or call them out on their aggression etc was how it was when you were more capable to respond and react as NORMAL as you were.. just imagine how it is when you are WEAK, FRAIL and struggling both mentally AND physically; almost sometimes at the mercy of others mercilessly drives home, the underlying reality, of just how vulnerable you really are.

Body temperature remains more or less the same re its offerings in the sudden most unpleasant severe drop in temperature, cold clammy, sweating and having to cope with that each time it happens?

I did learn however that increasing the room or ambient air temperature to attempt to increase body temperature ? Does NOTHING. FACT. How about 24 to 28 degrees C and you are still shivering, cold, clammy, sweating?

A simple hot water bottle, applied to the abdomen on top of light clothing / lower region with a large BATH towel wrapped around me and the hot water bottle beneath it I discovered speeds up the time it takes to bring my body’s temperature back up.. takes a few hours BUT much quicker than without it! The top of my head was also a most unpleasant cold zone.. fixed by wearing a wolly hat!

The left thigh in particular remains unchanged re lack of sensitivity, numbness, hard to the touch skin / muscle. There is NO doubt in my mind that the underlying, whatever is taking place beneath the skin et is and has continued to worsen,

The results of the former ‘muscle biopsy’ remain unknown. Now we are heading into over 7 weeks since that was taken ?? That re my left thigh in particular is critical when it comes to knowing IF there are certain factors which MUST be noted, that are CRITICAL.