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Week commencing Monday 22nd May 2023 WEEK1 WEEK2
Momday AM/PM :
Overall not such a good day. Some more mobility issues re standing / walking. Lower limbs are proving to be painful and the knees were giving me some ‘clicking- cracking’ sounds with impairment re movement being somewhat compromised because of that.
Some issues re SWALLOWING - DYSPHAGIA has been of some concern, there is dryness of the throat which does NOT help when attempting to swallow foods AND fluids.
Blood pressure spikes above my normal highs : 189 / 110 / 82 - I did a booster Ramipril 2.5mgs extra dose which eventually helped me bring the BP down to a more acceptable level 160 / 90 / 80 BUT I couldn’t reason why the spikes were so high when I had been resting?
Otherwise no real changes per all of the other continuous issues from other days.
I have tried to keep up exercises etc but obviously I am still at a disadvantage in what I can do without triggering excessive CK levels OR ending up in a lot of pain and serious discomfort.
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TUES / WED 23rd 24th May 2023
Some issues of concern re my throat. Noticeable from Tues onwards with gradual increase in soreness and dryness. Think of having ‘tonsilitis’ and the discomfort you get from that to illustrate how my throat at times feels
Swallowing fluids and solids is about level 2. However after swallowing and clearing my throat, the dryness remains AND if I swallow - NO fluids or food; there is a definite soreness / dryness.
Mobility is the same as Monday. On WED, I did get out in the UV for about 2 hours, to get some much needed fresh air and exercise which went OK except I was totally EXHAUSTED on my return.
After a meal I had the usual drop in body temp with coldness and had to resort to my hot water bottle to try and keep my body temp up. IT DOES work albeit limited, in giving me some respite.
HOWEVER one other ISSUE that IS a problem and has been getting progressively worse is random but irritating at times, falling asleep. When I say sleep; its not just short but can be several HOURS and the general malaise does NOT go away even after that occurs.
I finished a telephone call in the evening, sat back to watch some tv et and fell asleep. The time was 6.30 and I did NOT wake until 11pm !! I had already fallen asleep in the afternoon for about 2 hours !! I had something to eat and drink - throat unchanged re how it IS, still sore, dry and swallowing with some difficulty. Did I have a problem sleeping later after 2am ?? NO. 2 until 5am Did some tests and watched some tv for about an hour until 6am..
SO, to add to my list, general malaise AND lethargy over which I have it seems limited control. I CAN push to do things to force myself to stay awake BUT ?!
I’ll do some salt water flushes re my throat and see if that helps. I have an appointment with my Consultant on Friday 26th so can bring up all of the ongoing occurrences.
The two lumps are still there and now appear to have become part of my skull beneath the skin etc
The headaches also come and go AND as I have said before, until the last few months; I seldom had those to contend with.
Some visual acuity problems where I can get some slightly blurred vision momentarily, for short periods which again appear linked directly or indirectly to my general malaise / tiredness?
Blood pressure readings are remaining higher than my normal - at home - readings.
Tues : 180 / 103 / 84 - 172 / 94 / 87 WED : 192 / 95 / 90 - 179 / 113 / 91
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Thursday 25th AM : l
BP : AM : 189 / 114 / 90 Overall body temperature is warmer than usual ? Infection of sorts?
Throat remains more or less the same with the Mysphagia ? Possible sputum sample test et?
The neck remains clicky and crunches when moving which I try to avoid as much as possible, twisting or stretching my neck et.
Hands this morning are slightly puffy and with some evident swelling. Fingers are clicky and stiff.
Another peculiarity, is how the palms of my hands re the so called visibie ‘rash’ has slightly more distinct. spots. Some are definitely deeper in colour intemixed red spots to white flecks??? Usually to the edges of the palms, I have noticed odd spots in the centre now..
The recorded temperature on the palms was 99.5 F !
Forehead was 98.4F and ear temperature 98.4F
I WILL do a SARS covid antigen test this PM before the visit to the consultant tomorrow.
My GP did get in touch re a visit or call out re those lumps etc. BUT I’ve declined as I have that visit on Friday and I will see what the consultant says. I try where possible NOT to repeat something ie when it comes to blood tests et I don’t like having full blood screening et and then having the GP do the same etc especially these days when the results WHEN processed / available ARE visible (or should be ) on the NHS medical system for relevant viewing by those professionals et.
Genreally COGNITIVE functions despite the lumps AND headaches AND falling asleep! appear to be OK. I can get delayed thought processes where you are looking for an answer that you KNOW the answer to BUT it is NOT instant HOWEVER less than a few seconds later ?? Ah yes. Over the last few years I have noticed that but not overly concerned.
Today I have to carefully monitor the throat situation. One of the dangerous aspects to that is the sense that my throat when I swallow is also affecting my breathing ? I have to literally catch my breath a bit like waking from APNOEA ? I do NOT want my throat swollen to the point it starts to close off my air way!
Gut wise and digestion ? Some definite discomfort in the gut. Not so much ACIDIC but uncomfortable. Some flatulence is pretty regular and bowels are OK- no real issues there bar the urge from once to twice in a day on occasion. NO diarrhea, looseness or abnormal smells, colour et re ie bleeding.
Blood glucose levels = early morning testing is sitll within acceptable 5 to 7mmol/l
Urinalysis - fresh first test AM - nothing untoward detected re that test. Clinistix dip test.
Going to shave the areas around the lumps to enable clearer viewing AND photos etc which I will post here along with others to illustrate some other aspects of what I am experiencing re muscle and body mass wasting.
FRI : Might drop in and see the folks at my opticians re a look at my eyes.. I have already recently with the last few months had a full eye examination including some of the latest lazer tech scans etc ALL were fine. Yes I did need some bifocals but OK. I’ll see today if the problems re some blurriness et continues.
Diet: I try to avoid PROCESSED foods and generally stick to some home cooking re meat, veg etc a GOOD meal in itself PLUS fruit such as Oranges, bananas, black currants and or pomegranate !
Vegetables generally are a mix of carrots, broccoli, spinach, peas, beans, potatoes. No veg meals can be meat plus etc tinned beans or tomatoes. BREAD I tend to use ‘seeded’ bread that I know does not cause symptoms similar to ‘irritable bowel syndrome’ which I experienced from using mixed grain bread!
Breakfast generally consists of MILK about 1/2 a pint with cereal. Shredded wheat / weetabix etc and I don’t get digestion issues et with those.
A COOKED breakfast of bacon, eggs, tomatoes, TOAST (not fried bread) is another substitute.
OR herring with dried bread is another variation to my breakfast. I can’t eat that later in the day because I do get indigestion from it. Likewise oily fish such as one of my favourites; mackerel can leave me with some regurgitation / acidity. Dried NOT toasted or buttered, bread, does help to reduce the discomfort after such a meal. Fish obviously is good because of the added Omega and other essentials they provide.
Thurs PM :
BP still higher than my usual ‘normal home’ readings. 181 / 111 /90
Dysphagia continues to be a nuisance re swallowing, re the discomfort in my throat which is more than apparent along with the dryness and after taste?
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Fri AM : BP still high. Today I have an appointment re the consultant = my monthly review. Overall I know my blood pressure when they take it will be high. It actually turned out to be well over 200 / 120 et No surprises there.
OK let’s go over what issues were raised and some of the responses.
OK to make things easy here.. ME = BLACK Consultant et= BLUE
1. Those lumps.. suspect glands? Other concerns? Consultant: Dismissed.
What lumps?? seemed to be more of the response.. Uhh the ones that were NOT there the last time that I was seen.. two distinct masses ?? Ah well they’re just a normal growth so nothing to worry about.. Uhh SO.. Just run your fingers over them NOTHING else.. SO.. they are Not malignant? = UNKNOWN. Of no concern.. ??? The appearance of two masses is not to be considered of any real concern??? Apparently not..???
I need to make a point here... this is what sometimes happens when things like this get dismissed and end up later turning out to be OF SIGNIFICANCE. Not being able to quantify either way is NOT the answer re ‘of no concern’?
2. The thigh re numbness and ongoing issues.. It does not matter as to what level this is, there has never been more than an acceptance that it is what it is and ongoing tests that are and have been carried out are failing in being reported re RESULTS, failures re some of the tests actually being carried out... despite the Consultant ordering certain tests etc ie bloods taken and failure re them being processed??
3. Muscle Biopsy is still NOT conclusive.. in fact, as i have repeatedly pointed out, the problems I am PHYSICALLY experiencing have been there for months and are NOT getting any better or less of an issue, if anything re the left thigh WORSE.
Thus solutions, treatments = of little consequence. Masking symptoms, easing the CK situation so that I can be a bit more mobile due to the steroids .. BUT otherwise does NOT resolve the underlying CAUSE and EFFECTS. OR determine what is going on beneath the skin so to speak FACT. Its assumptions, an hypothesis of sorts based on what is KNOWN but also against what is NOT KNOWN.
4. Dysphagia. It does not matter what you experience, what you KNOW is or has happened.. how the Consultant reviews that can be borderline cynical at times? OK so I’m referred or expect to be re those who can do some more tests et to reassure me re this.. Uhh.. if it is happening and I KNOW that what I have and are still, dryness of the throat, after taste, difficulty re swallowing fluids or solids OR just a gulp on an empty throat?? BUT more alarming the APNOEA kind of after shock where you end up coughing to try and clear your throat and airway?
5. The after food.. cold clammy sweating.. that can last for hours.. Ambient air temperature can be a sauna and it does NOTHING re helping to directly or indirectly restore body temperature. Applying a hot water bottle turns that COLD into a warmer sweat et which is better than the COLD.. Does also appear to reduce the bodies time to return to a more normal acceptable warmth minus the other issues.
There appears to be little or no recognition or response re this.. it is what it is kind of attitude?? HOWEVER what could be triggering it could be VERY RELEVANT. Motor neurone or MAP 2 related ??? Could also account for the frontal lobe headaches, central cortex related??
Overall the FACT that there are so many test results UNKNOWNS plus the ones that are available.. inconclusive, questionable or very weak re being of any real substance OR generally not being available full stop ??
The current situation re the NHS UK is of course (May 2023) re strikes, protests, delays and more, going to create instances where inevitable delays even some errors etc occur. SO, you can have all the tests etc examinations, discussions, decisions made that all are and can be volatile. Frustrations are not just patient but also in fairness experienced by those in the mix ie the Consultant; wanting answers, test results, tests carried out that ARE carried out and end up getting repeated etc due to ?? !!!
Which leads to a final conclusion on my part that has not really altered since all of the issues that i have experienced to date; occurred and are still coming to light.
I was never one for totally relying on others re answers and solutions when it comes to what I feel, are experiencing AND what I KNOW are the FACTS, weighed up against being subjective and rational etc?
It does not matter who or what medical professional you have re Consultant, GP et As a ‘patient’ you are at their mercy re their experience, their ability to diagnose and treat YOUR ills etc ??
Actually LISTEN and in some instances when you say ‘THIS IS WHAT I AM EXPERIENCING is not some fairytale they are creating for you.The curse of so called medical professionals who do NOT talk to you they TALK AT YOU. Assume they have all the answers, their assumptions are absolute. can’t be anything else? Therein lies the underlying horror when and we all know it DOES happen; when they’re judgement is flawed and you the ‘patient’ end up on medication that proves to be WRONG ?? Right at the time ?? OR ??
The work pressures that those medical professionals have to endure.. means overall YOU ARE one in a million is no laughing matter. its a FACT.
Immigration, illegal immigrants, put added strain on the NHS system.. now add in those who are and have been maybe for decades with their GP et the usual THOUSANDS who also still have some cause to complain when they have to join the queue to see their GP ? The failures keep on coming like some trip, a hell ride that could easily equate to some journey in a barrel over Nigara falls .. ???
Doping you up, shutting you up in many instances; works. Next please.. a salutory truth. IF you challenge that rhetoric or can think outside of the box so to speak it can work for you but at the same time get up their noses.. no surprises there.. its human nature and medical professionals et are NO different re those traits. You just have to remember that if YOU are right ? It is of course should complications or unknowns occur that they will pounce on that to declare ‘you should have done what we told you to’.. ah repercussions ?? Cept IF let’s say a GP were to get something WRONG and it was proved WRONG or unsound judgement, a wrong decision guess how many will be held accountable when things go wrong for the patient??
What can be good, bad or indifferent ? Your treatment / diagnosis based on various ‘symptoms’ traits that follow a given ‘pattern’ which would indicate the odds are.. it IS this or that, well until tests, results et prove otherwise OR PROVE it is what it is? The serious dangers re that are when there are ‘symptoms’ additional issues that don’t follow that pattern or are later discovered to be accepted as being part of the sum o fhe whole and NEW or a volatile variant ?? It is this and everyone accepts that as it IS, the rest can end up getting ignored or side tracked because the focus is on the it IS.. missing something that should have been included, critical even ?? Until sometimes it is too late ...
On my part I have adopted the stance that I have to protect my own health and well being based on my experiences. my knowledge, my understanding of what IS ongoing re issues coming to the fore, that have troubled me in the past AND having the *alls to stand up and be counted when it comes to what I will and will NOT accept. Not just the nodding dog in the back of the car... I have the right to question whether what the GP et is proposing is in my view right?? Am I totally convinced OR?? IF I start treatments et medication and I find something is NOT how it should be and even compromises my HEALTH, my WELL BEING??
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Weekend
Sat 27th May 2023
AM: Blood pressure 188 / 106 / 85
I also have some eczema which is quite coarse, that I have to be very careful NOT to break the skin et as I do NOT want to get that infected. The numbness over that is also a VERY relevant issue.
Some pain from a headache that also appears to be affecting my eyes.
The general malaise, tiredness now getting monotonously regular has me resting my eyes momentarily only to fall asleep and wake up sometimes HOURS later.
It does not matter if I manage to get some quality zzzs ! The tiredness and general malaise remains .. almost unaffected by that. Liken to iron deficiency??
The general attitude re those ‘lumps’ I suspect is going to be somewhat of a future controversy. Why do I think they are still ‘growing’?? We shall see if I am right re that AND what transpires. I am not bringing them up again re the Consultant NOR the GP. What correlation is there between them and the headaches??
PM : Blood pressure 178 / 101 / 86
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Sun 28th May 2023
AM : Morning started with raised body temperature - burning up, somewhat flush with heat. Fighting off an infection? Dry throat, after taste persists. Blood glucose 5.9mmol/l BP : 188 / 106 / 85 Urine OK
Tiredness and malaise add to the discomfort re the heat, much slower re mobility. I have to push myself to do even the simpler things BUT I have resigned myself to ensure that I do not concede even when the odds are not so good. Well as the consultant says, there is always A and E in an emergency.. uhh NO thanks.. until I grow a pair of horns, I’m not going near that hell.
Overall struggled through and accepted situation as was. The heat was finally broken after a meal when as usual my body temperature dropped dramatically, somewhat having a cooling effect, though remaining in the most part, as always, most unpleasant.
The eczema remains granular in texture and sore to the touch though the decreased sensitivity re the usual NUMBNESS remains unaffected. the eczema seems to be concentrated in one area.
PM : BP 168 / 111 /110
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