Stephens Blogspot

 
     
 

A Very Big Thank you goes to:

My Mother
The Adams Family(Botswana)
Hope(Scotland)
June (Scotland)
Kat (Scotland)
Gary (Scotland)

Brian M. (England)
Linda (Scotland)
My Sister Sue in Australia
Anamar (Scotland)
Manushi (India)

Norah (Scotland)
Levonne and Mother (Australia)
Betty (Scotland)
Alannah (Scotland)

A very big thank you goes to the above, their contributions are aiding us in getting our offgrid property setup so as to lower the stress level, as well as helping pay for medical costs, without the above people it would have been an even greater struggle. THANK YOU!

 

  This blog is a blog where I keep track of my health, and also serves as a way for others to see how it's going with me, I will be posting alot of how I feel on the day, and as and when I have a good day that I can accompish whatever was thrown my way I can update on here too.

If you would like to buy us a brick, or contribute to medical costs please use the paypal contribution form ambove right.
     
07/10/2024

This morning I have awoken feeling fairly good, I still have pain but low level in back and legs, but not so bad, I am also not got the exhausted feeling, but I do have lead like legs though. my head feels fairly clear I think I will make use of the time to make the wooden box form today.

Today is another dose of the Chemo drug Methotrexate, so Ill expect to be going downhill again for a day or three, especially the nausia....this seems to be the worst side effect of the drug, then I also get buring eyes if I touch anywhere around my eyes, I also get some Gastric upset as well, but thats not too bad. Who would have though a chemo drug would make people feel better.

I am seeing quite an improvement in my health, as well as a huge diffirence in mental health state as well. This I am the most thankful for. I was really low just before starting treatment.

My eyes are still quite blurry, and I have some light sensativity, but dark glasses help for that.

 

 
     
05/10/2024 It is super hot morning this morning, a fairly good one though. While I am still not able to do very much, I have lower pain level at about 1/10, but I have the super exhausted feeling and shakes 8/10. I can only equate it to when one has an infection that is super bad, and your body has little energy to run on. This seems to be my daily feeling at present. The upside of it being hot, is the pool is ready for use, so thats the silver lining I guesse. My daughter loves water, and would spend every moment playing in the pool of she could, the water is super cold though, so she can't spend very long in the water before she starts to shiver, but she fights off the cold and refuses to get out each time. I must say that being in the water actually makes me feel a little better too. The heat really wears me down, the funny thing is even being under an AC I can feel the effects of the heat, I don't know how that is possible, but I can be under the AC not knowing how hot it is outside, and can tell by how bad the exhausted feeling is that is hot or not. Unexplainable, but somehow the heat even when in a cool area like inside has an effect.

The nausia is not so bad today, yesterday afternoon was the peak. Its a diffirent kind of nausia, than what the pain caused, I don't know how to explain it, the pains nausia felt on the top of the stomach, while this nausia seems to be more in the middle/core. I am glad I have little gag reflex, else I would be chucking. My eyes are super blurry this morning as well. The lead like feeling of exhausting is not fun, to even get to the bathroom feels like I have to move 10tonnes. Sometimes even thinking feels like a chore.

I actually got quite a bit done in the garden yesterday, planting quite a bit of seedling trays, luckily I have an automated system to water them, and cool them in the heat of the day. These super hot days are not good conditions to get any plant to grow, especially this super dry heat. We should have a good yield of grapes this year, 2nd year they have flowered and producing, this year they have quite alot of bunches that have started to form grapes. I have no idea on the variety, but I suspect it is Reisling grape, super sweet, with quite a slightly bitter skin, it was extensivly propogated in the cape region and was planted in the back gardens of many settlers. Last year I made a few bottles of wine using the grapes, and in a few years I will give it a try, hopefully by then I will be healthy enought to have some.

I am learning more on how to make videos, and hopefuly I can make a more entertaining video that people will want to watch. Maybe one day Ill have the skills.
 
     
04/10/2024 This morning I've woken with an increadible headache, blurry dry eyes, dry mouth and nose, yesterday afternoon I had a slight sore throat, but that has gone this morning I also have the "moon face" where the face is puffy from the prednisone. I have had quite a bit of nausia since yesterday, and it comes in waves. Very low level lead legs feeling but still I have brainfog, and a feeling of pressure with the headache, I have bouts of slight dizzyness if I move my head from one side to the other a little fast. Pain is 1/10 little on the lower back kidney area and down the legs. I seem to be recovering slowly on the Methotrexate and Prednisone. I hope the brainfog will go too at some point.

The weather here is cool at night but super hot during the day. Sun belting down with zero clouds, and low humidity, not outdoor weather at all, but I will have to at some point force myself to get the molds done, might just jigsaw it, instead of using the table saw. I will need to get things done, to make use of the summer planting seasons.

 
     
03/10/2024

This morning the nausia is not as bad, have very little pain, very little of the exhausted feeling, but I still have quite a bit of brainfog, and my eyes are blurry again this morning. I still can't use machinery because of the brainfog, so I need to wait till a clearer day to be able to make the molds for the concrete. It is back to being extremely hot, but thankfully indoors has held on to the cooler temps, but it wont be for long with this heat. The heat has gone from perfect, to extremely hot over night, this has the affect of draining energy from anyone, especially when its creeped over 35C and heads towards 40's. The humidity is super low, so sweating actually helps, when the humidity climbs and it gets that hot, sweating doesn't help to cool you down.

I find it very difficult to get much done, pushing through the brainfog I can get simple safe tasks done but I know I need to stay away from climbing masts, and machinery. I am getting a little work in drips and drabs for network configurations, which is welcomed.

 
     
02/10/2024 I feel very weak today, the shakey vibration/exhausted feeling is very bad, my eyes are very light sensitive today, and are burning. I have occasional nausia, and very heavy lead legs, and arms. I feel very very exhausted. I also have hunger like pains, but not its not hunger. I am having difficulty keeping a train of thought today, and easly distracted and can't concentrate much. The nausie is actually the worst I have had in a while. Mental state is quite low.  
     
01/10/2024

Woke up today, with very little pain at all, and only blurry vision and dry mouth with very low level pain with bouts of nausia now and then, its been a good day so far. It has been a very mild day today. Ive harvested some barley and gone out and watered the garden moving from shade to shade. The skin on my hands is super dry and flakey, but this doesn't bother me too much, unless it starts to peel and bcomes raw. It really has been a nice and quiet day, very relaxing, and the fact that the cold from South Africas recent snows have now reached us mean we have a very nice summers day here. No need for AC, and outdoors its a prefect comfortable temperature in the shade.

I hope that my eyesight will also start to normalise a little, cos they are so variable even wearing my glasses means I have blurry vision, especially text.

The barley I planted over the winter, is going to be used for seed stock when we get started on the plot, this will be our off season crop, used to feed the livestock and poultry. It is very hard to get grain seeds here, as we are not known to produce grains, but my test show that barley does very well through our winter season, and it's quite drought tollerant, so doesnt require all that much water. Perfect to produce food for the poultry and livestock. I will also be looking at sunflowers for feed, as well as maize, and will hopefully be able to grow sufficient amount to keep stock fed from the land. I

 

 
     
30/09/2024

Happy Independence Day to Botswana. While I have nothing to celebrate other than being able to get up this morning and being able to see the happy face of my daughter. Yesterday afternoon I started feeling ill again, and by 9pm I was in quite alot of pain, joints aching, hard to breath again cos of the weighted chest feeling, and got quite a bad headache. I went to bed earlier than usual after taking my evening pills. This morning I have woken with pain in my back between shoulders all the way down and then extending into the legs and knees. My ankels down are OK, I have slight headache my eyes are super blurry, they at least don't have the arc eyes burn today. Yesterday I used a hammer, and managed to stomp my thumb, not too hard, but it still has left a bad bruise and a small blood blister. This is a side affect of both the chemo drug as well as the cortisone drugs. I also have very dry mouth lately. I have taken my 2nd dose of the Methotrexate(chemo drug) today. So I'm expecting it to negativly affect me a little worse that the first dose, since I may still have some in the system. I am told that in time the system will get used to the drug, and in time the side affects may not be as bad.

I have some of the side affects, but overall I think it's not too bad. I get a slight nausia(granted I have nausia for years so Im so used to that feeling) I have had headaches, but not sure if it is as a result of the drugs or not. Have not noticed hair loss, although that too I have lost alot before any drugs. I have a very raw feeling inside the mouth, this too is a side affect of the Methotrexate I believe.

I have noticed that IBS is virtually gone since being on the cortisone, and my gut seems to be much happier, except for after taking the Methotrexate, last week I got the upset stomach and IBS like symptoms for a few days. I will see what this dose holds.

I have setup our portapool for my daughter to enjoy, shes now tall enough to stand in the pool unassisted, although I wouldn't allow her to play in the pool without one of us having a hawk eye over her. She really enjoys the water.

I have setup a tarp over the pool to provide shade, as the African sun is not a joke, the UV can burn in less than 30min, probably also why I ended up feeling super bad yesterday afternoon, as I spent a short while setting up the tarp. The water in the pool is still quite cold, which actually is a relief during these super hot days, a friend measured 43C the other day. Yesterday our house on the furtherest point from the AC unit measured a maximum of 36.9C and a Maximum for the year so far 40.9C this is indoor temperature not outdoor.

Probaly why I've not been feeling so great, and feeling so exhausted, and not getting anything done as outside is like an oven. Our Minimum temperature over the last week has been 21C indoors.

My mental state is not super low, but is still low. I do feel my mental state is improving though, which is very welcomed. The more pain that is aleviated the better my mental state becomes, but feel that I have been super low for so long it's going to take some time to come right.

Pain today is probably 4/10 on my back and 3/10 from my legs down.

I don't have much planned for today, just enjoy a relaxing day.



 
     
29/09/2024 Yesterday, was a good day, I had little pain at all, and didn't have the lead/tired feeling all that bad, I was kept busy for most of the day, assisting the with the configuration and setup of starlink units.

Today I have awoken with a headache, my knees ache and two spots on my back between my shoulders and lower back just bellow kidneys, I have mouth sores again this morning, and the inside of my mouth feels raw. The rawness I think is a side effect of the Methotrexate, but the sores/alcers are a lupus symptom and I have gotten them on and off for as long as I can remember. My eyes feel like I have a slight case of arc eyes, but have not welded in more than a month, so can only be caused by the UV from the sun. I will have to make more effort to wear sunglasses when I go outside. We are going through what we call suicide month, because of the increadible heat over the October perior before the rains set in . It has already started getting to above 42C during the day. The sand gets so hot, it can burn blisters. So not doing much at the moment, cos as soon as I expose myself to the heat I can feel the energy drain, and then I start to feel super bad.

So for now the plans on the plot are on hold, till cooler weather, I still need to make the molds for the concrete.

In the garden in town, we have started planting the summer crops, which if this heat continues will be for naught. Last year I didn't have much of a summer harvest, because the lack of rains meant we had these excessive heats daily for far too long that the plants didn't survive.

Our tomatoes we planted mid winter took a long time to mature, but they are starting to ripen, so we have early tomatoes, the cucumbers have been transplanted, but are far from production, lettuce we have an abundance, but with this heat they are all bolting.

Beetroots are ready for harvest, as are some cabbages, carrots should also be harvested, but take as and when we need, untill I see signs of bolting then I will quickly harvest. Onions are not doing all that well this year, they are growing but for some reason they are not bulbing as yet.

I have uncovered the pool, and I will have to make a plan to get a cover that can keep myself out the sun, as my daughter loves water, and putting a cover is the only way I can spend time with her in the water teaching her how to swim.

 
     
27/09/2024

I went to bed very early last night, I was so exhausted, today I have awoken with a heavy heart due to a dream, the dream upset me quite badly, why I don't know. I have spent a little bit of time outside planting some herbs in our containers, and removed old plants. The turmeric has started growing again, and the new shoots just starting to break through the soil.
Today although a very sad heart from the dream, I have 2/10 pain, but that lead legs and arm feeling quite heavy as well. It would seem as if the chemo drug has run its course with the side effects, other than a little light headedness, I don't have that blah! feeling from it. Just the lead feeling (shakey and heavy) with a low level of pain. My head not quite clear, but not as foggy as other days. My eyesight is super sensitive this morning, and I would equate it to the light sensativity from a hang over.
I feel slightly feverish especially in my core (center body mass) normally I feel it in my head but today it seems more in the body. I am also feeling a slight burning in my stomach this morning, not quite like the hunger type pain I have had, but more like a hot coal.
I also can feel my heart beat heavy, and with every beat it feels like energy is draining. I think these microvibrations/shakes saps the energy, and the hotter it is the more energy is lost.
I am super tired already, and again even thinking clearer I still can't keep a thought trail going. I'm kinda like a gold fish, 3 seconds and my mind is elsewhere.

I am feeling improvement, but it is slow going, and some days better than others.

 
     
26/09/2024

I woke this morning with a starting migrain, had my breakfast, and the handfull of tablets including something for the headache, I don't have very much pain, but I have the very blah! feeling Exhausted and shakey, it's effort to keep my eyelids open, but not sleepy if that makes any sense.Almost as if a brick is attached to the eyelids. I have tingly buring hands today, and they are starting to peel in spots. My upper legs feel like they have lead attached to them, I have slight pain in the hips and lower back, but 1/10 I would say.
I have a feeling of head congestion a foggy dumb feeling(I don't quite know how to explain it) I am struggeling to keep a train of thought going. I have a ever so slight weighted chest feeling, this has aliviated quite alot from 3 weeks ago when it was so painful to breath.

Deciding on what to eat seems to be a daily challenge, I eat alot of fruits (Apples, Pears and Bananas) but our main meal in the evenings is always a chore to decide what to eat, as we have very limited vegitables. I grow what I can and we eat what we have in the garden but this gets quite repetative as we only have limited vegitables in any part of the season, currently lettuce, cabage and carrots. This basically accompanies every meal, but is getting a little monotonous.
We don't have shortage of meats, meats are cheaper than veg here, but also I should only be eating small portions of meat due to the iron overload.
I have also yet to find any foods that trigger any worsening symptoms. It would be nice to know what causes worsening or triggering of the lupus symptoms, but have not been able to link anything yet.

I do know I can't tolerate as much fatty meats as I used to. The flavour is in the fat, but can't tolerate much fat anymore. It makes me nausious, but I don't get any worsening symptoms that I can tell other than the nausia. but it's also very difficult to say, as one day I feel better than the next.

I do know from previous experience that when we go to the coast and I eat predominantly seafoods I feel a thousand times better. I aways thought it was the release of the stress, which could still be, but think the diet along with the cooler ocean weather made me feel better.

I completed the video of the Plot walk, again I am still learning, and hope it's not too boring, Ill put more effort into videos when I feel better, currently Im just doing videos of the surrounds, in time I will get better, and once I know more I will get infront of the camera. I don't like being in front of the camera, but will do a vlog series once I have started healing more.

I am no editor either, so I have alot to learn, but learning when unable to concentrate is also not that easy. I don't have any comment section on this page, but you are welcome to leave a comment under the videos.

I hope it's not too much of a bore, and thing progress very slowly as Im not getting out to do much, but do try on the days that I feel slightly better.

Anyway agian to all fo you, thank you, I wouldn't get anywhere without you all. Its slow progress for me, but your help means that I am still seing progress, and for that I can't say thank you enough.


 
     
25/09/2024

This morning I don't feel as bad, still have pain all over(lower back kidney area down to tailbone, and upper legs are worse), and nausia. It really not as bad a yesterday, I have a little brain fog, but its also not too bad. I have the exhausted feeling (I wish I could shake this) also not that bad, but can feel the energy being sapped as the temperature and sun rise higher. I am going to be making molds for the casting the stays in concrete today, if my head remains clear enough to operate machines.

Afternoon update: I have had quite a bit of nausia today, but not too drastic, pain subsided a little, and has then come back. My eyes still dry and burning, and have quite a bit of brainfog at times. I also have had hunger like pain all day, and eating doesn't get it to stop.

UV is quite high today. I did go out to the plot and had the stabaliser post holes dug(I wouldnt be able to) by hiring 2 labourers for the afternoon. I didn't get round to making the concrete molds, but will nock them together quickly before going out with some concrete.

Slow and steady. I did get some footage of the property which I will edit together and put up. You will hear it's suicide month, the cicadas going crazy in the background. At this stage Im not really setup for audio or video recording, so please bear with me I am an amature at the videogrophy thing, and I have very little editing skills too.

 
     
24/09/2024

I have awoken today very weak, and with quite a bit of pain, the shakey feeling is quite bad this morning, I am swolen all over, especially around lips and eyes. It is most likely due to the Chemo drug Methotrexate. I really feel rundown this morning, almost as if I was hit by a train. I am sleepy tired already, and feel as though I could crash for a week.
The weather is looking good though, overcast and dark, our sister town in Namibia(Gobabis) had some rain already so who knows, we just might get some early rains, not quite ready for the rains as I still have lots to do before I can sow any seeds, but won't not want the rain, in a dry place like the Kalahari the rolling thunder of a storm is alway welcomed.

I don't know if I will get much done today, I feel very weak, although I do have a starlink dish that I have to go link up to a clients network, so whether or not I am feeling up to it or not, I need to go and do it.

Evening Update: I installed the starlink kit, and came home around 2pm, I have been super weak, and in quite a bit of pain, but can't say where it is, its all over, and the last time I felt this kind of pain was when I had blood poisoning as a child. Its not the normal aches and pains. I also have hunger like pain sensation on the stomach, as well as nausia. The nausia I was expecting to be worse though, so far the nausia hasn't been that bad.
I took a nap from about 5-6pm but awoke just as tired, but in a little more pain. I have pain with each breath, and I can kind of explain it like having over inflated lungs pushing out on the diaphram, so the ribs in that area are sore.
I have eaten a full meal, so nausia is not so bad, that I have lost appetite. My eyes are dry, nose and mouth too, eyes are burning though, and the blurred vision is quite bad today, that even reading glasses are not working.

 
     
23/09/2024

I am late to update today. I was a little busy today, had some work that needed doing. I woke this morning with a headache again, not just a little one but full headache, had minor aches and pains which gradually got worse, but today the feeling of exhaustion was much less, and the shakes barly noticable.

I also had some back ache in the lower back to kidney area, and some in the legs. Overall today has been quite bearable, I have aches in my finger joints from my thumb to middle finger on both hands, this is is known to be an issue with iron overload, and I suspect my iron is climbing again. It was high on the previous bloods, but not overly high.

I went to the doctor again today, didn't have blood works done today, but started the Chemo drug Methotrexate on a low 7.5mg dose. The drug is an imunosupressant in Lupus and Inflamitory Arthritis it is used to suppress the imune response, reducing the risk of long term damage that the inflamation causes, and also helps protect lupus sufferes from organ damage caused by the inflamation when the body attacks its own cells.

It is used in higher doses it's used in Leukaemia Cancers and Lymphoma as well as breast and bladder cancers.

I already have hair loss with a 1" size balding spot in the middle of my head near the forehead, TRUMP combover engaged!

I suspect that since I am already having hairloss, I will be seeing more of this, so far I have not experienced any adverse affects from taking it, but I'm told that up to 3 days after taking it the affects can be fealt.

I have been given cortisone cream to put on the fingers to help stop them from peelingm they currently feel numb almost like when one has superglue layer over, I think the top most layer has already died, and is going to peel in the coming days to weeks.
Overall I think today has been semi-productive, with little pain and little of that shakey exhaused feeling. My mind seems clearer, although I still have moments where I have heavy fog, but it hasn't been constant today.



 
     
22/09/2024

I have awoken again with a slight headache, but pain levels 2/10 with a little pain in the left foot and lower back, this is the least pain I have for as long as I can remember, even having the headache. I don't have the bad shakey feeling as much today, today I feel almost normal, except my eyesight is very blurry today, I have a little upset stomach and some IBS today, but not really bad, just some discomfort with a slight lead legs and arms.

Mental state is a little better, but still low, and I still feel as if an elephant is still sitting on my chest. I am seeing improvement, but also see that one day can be better, then the next worse, and I have not been able to say if it's something that I have done, or eaten, I can not link any foods with feeling worse, it almost seems random, except I have noticed physical exertion knocks me back quite a bit.

I will see what tomorrow holds, and if it's a good day I may go out and concrete the corner stabaliser stays in place, then its not far till I can put up the fence wire itself.

I haven't been out to the property in 2 weeks now I think. I need to get things done else I'll not get it done before the rains start. We have already had the first drops fall last week, not enough to even wet a layer of ground, but precipitation none the less. So I'll need to get the ball rolling faster to get the area fenced off and prepared for planting or I may miss out.

I have been looking at the next step, water source; while we already have a 220v pump in the borehole and is able to supply water running a Generator, this is way too expensive to run for any form of irrigation. I am looking at ways to be able to get a solar controller that runs without batteries, just using PV but have yet to find a suitable controller, or pricing. I feel it's better to go this route, rather than replace with dedicated solar system, as if anything goes wrong, with the pump, I can source parts or even replacements very easily. It's only an issue if the controller goes wrong, but then again it would be the same for dedicated solar pumps. The problem with solar pumps like grundfos is that they are not servicable, which means that if anything goes wrong, its the entire pump that needs replacing. So I think the option of getting a controller running regular single phase 220v pump would be the better option, that way if anything goes wrong with the controller there is a plan that can easily be made using generator or even portable solar systems. The pump I have already is a 0.55KW which is quite small, and would run on many smaller inverters as well. It's yield is not all that much 5000L/H but enough for the area that we intend on irrigating for now. So I think the best route is to get a 220v controller that does not require batteries to run the current pump.

While typing this I got up to go and do something, and I knew I had to go to our storage shed in the back yard, but upon arriving in the shed I couldn't remember what I went to go do. This is happening more often than I like. I have come back inside in the hope that I can remember what I went to go do, but still I sit here trying to remember what it was that I went to do.

I am really going crayzy, gave up on thinking about what I went to do, then went to kitchen an heard our water pressure pump kick in then it hit me, I had gone to bathroom and saw the toilet water leaking into the bowl, I had gone to see if I had a rubber seal in a toilet kit that I bought for the float. I don't know if its meds that cause this or not, but its scares me sometimes how short my memory is, and how I can't concentrate.

 
     
21/09/2024

Yesterday I did not update, I was in court the whole morning only to be told the case is postponed. Great, for my health! Increased stress in anticipation for the finalisation, only to be told nope next month. After getting out, I went out to help a client, and while there I developed fever, such that I had to stop and come home. I didn't have much pain yesterday and today I have woken with slight back pain and that "gout" pain in the foot has lessened slightly. I can almost walk normally today.

I think the weather plays quite a large roll in how I feel, as today and yesterday has been slightly cooler weather, and I feel beter with the cooler weather, but I also think diet may have quite a large roll too. I have noticed that after eating lamb, I tend to feel worse, and lamb is our primary meat source, I am wondering if its the fat or the meat, I will start reducing the fat intake from the lamb, and see how that goes(The white meat is the tastiest though) I still have the heavy legs and arms feeling from the microvibrations/shakes, and I woke with a headache this morning, I haven't had one since starting on the cortisone, this is the first one. Took paracetamol and it has virtually gone. I have not taken any hydration salts in the last week, so maybe that is the cause being low on electolytes. It has been hot, so maybe I should take the rehydrate salts more often.

Overall I feel much better today, so every day in a improvement, I feel my mental state has slipped back a notch, but that may be due to the headache, as I still feel as if my head is being squashed in a vise from the headache. I am tired, so will be eating lunch then going to take a super nap to recharge a little. Thankfully our bedroom holds the chill from running the AC through the night, so is nice and cool.

I have not been back out to the Plot this week, I would like to get out in the coming week and I hope to do a walkthrough the planting area, as well as a little "veld" walk
It is very dry at the moment as we are in the driest part of the year, but the trees have started greening. It will look a little depressingly grey and dry, but doing a walkthrough now, and then after the rains start one can see the change that the seasons bring.

Anyway, Ill sign off and have lunch before going for a nap.

Late afternoon early evening update, I unloaded checken feed, 50kg bags, when I was healthier was not a problem, but today, the slight exhertion loading the bags onto a wheelbarrow, and pushing it not even 10m to the containers, and then emptying the bags into the container exhausted me, that the shakey feeling was really bad. I know I should take it easy, but a simple task seems impossible for me, and it is very frustrating. I still have a slight headache this evening even after drinking a rehidration salt pack.

Hopefully the cold in South Africa will reach us this evening, cos I could do with even cooler weather. I really don't mind the cold, one can layer up, but there is no escape from the heat.

 
     
19/09/2024

I have awoken with very little pain, still have a shakes, my eyesight has improved slightly but still quite blurry. I have the gout like pain in my left foot still and a ever so slight back pain this morning, but my stomach still not happy. I believe it's due to the cortisone, as it has been getting worse after taking med. Maybe due to not haveing large enough meal before taking the meds (I'm not a breakfast eater) So today I have had a larger cooked breakfast to see if it will easy the stomach. Even with the minor foot pain, and stomach upset, my mental state feels uplifted, and I feel much better mentally this morning. Pain levels are back down to about 3/10 mostly the foot, and the discomfort from the belly upset, back is slightly tight but can equate that to similar pain when one has excersized and have stiff achyness.

It heated up quite quickly this morning, can feel the heat building minute by minute, this African sun can be brutal. I was out for a short while 2 days ago in the sun, and the tiny blisters that turn into scabs on my forhead are back. They are so tiny one can not see them, but feel them. Macro lens is required to see them. So Definatly must stay out the sun, but also need to balance exposure so I can still get VitD

I am hoping to get out to the plot this weekend, but that will depend on how hot it gets, we only have a corrigated iron shed, that we use to overnight, and that gets brutally hot as soon as the sun hits it. So may not overnight there this weekend.

Afternoon update: Today has been fairly OK and have been able to do small jobs, I managed to harvest some barley from our test bed in the garden, 650g from about 1sqm, that translates to 6.5Tons per Hectare, which is an excellent yield. Now to find out how to process it further, into a usable product. I have never done grains like this before.

So we have got it down to the berries with the hulls, I now need to know how to dehull the berries, and then they can be ground down ito flour, or I could malt them and make a beer.

Will have more then enough seed to replant when the rains arrive.

 
     
18/09/2024

Today I have awoken with little pain in most of my body, but have gout like pain on the outside bridge of my foot, putting weight of any sort on the foot is quite painful, and when at rest it has a burning sensation, I have pain in the lower back region near the kidneys. I am not feeling as exhausted, but I still have the shakes/tremble feeling. Brainfog is not too bad this morning, my eyesight is blurry again this morning I have red veins showing in the whites of my eye so obviously affected by the inflamation. My Mental state is not great but but not super depressed either. Tomorrow I have to go to court, 2 years ago I went in to the police station complaining about illigalities at our neighbors and liqour outlets, and this resulted in Police charging myself with a charge of public nuisance, because I had called them useless. Laughable I know, and the fact the officers proceeded is even more so, I was ill at the time as well, and the next day I had gone through to Gobabis, where I was found to have high blood iron(ferratin), and this was cause of high BP. That was probably the start of the journey to getting diagnosed. In anycase I have been advise by our lawyer that I shouldn't wory since it's just a ruling, but I do not trust the justice system, as this country is so corrupt. Its hard not to worry untill you know for sure what the outcome is.

Alot has happened in the last couple of years, and I think much of it combined is what has affected my health, and what is causing my current flare.

I have been wanting to go and put up the corner stays on the posts, but just havn't had the energy or the will this week, and it seems as if the weeks consists of a Monday and a Friday, I struggle to keep track of time, especially when the brain fog is quite bad. I have no idea where the time goes. Its scary to now that you have accompished nothing in that time. I hate that fact. I have so many projects I'd like to complete, but know when I have brainfog, I should be near machinery. I have a few woodworking projects, Elani has asked if I feel up to it, to make a little stove for Jessica, and paint the door with chalk board paint. I have everything to complete the job. Its such an easy job, its building a box with some cutout circles for the hot plate, but I know if I attempt my mind wont be fully on the job and I may get a finger cut off. As it is I cut lamb up into chops and touched the meat saw blade, luckily it was the nonserated area of the blade. That was a warning!

My gut feels much better today, the other day I had such cramps and I still don't know why.

 
     
17/09/2024

Woke up today with with pain level up 7/10 everywhere aches, joints cracking as I walk, much of the pain coming from lower back (kidney area), hard to breath again this morning, eyes are blurry brainfog. Yesterday afternoon I had a bit of an upset stomach, so think whatever affected my stomach has made today worse. Upside is I don't have a headache, so if I sit still it doesn't hurt so bad.

I am also haveing a little drunk feeling this morning where I feel a very slow spin. eyes are light sensitive as well, and the pain causing a little nausia as well, chest feels like an elephant is sitting on it, my hands and fingers tingle with the finger tips feeling quite raw. I still have the shakey feeling (micro Vibrations) but to a lesser extent this morning, Have this empty hunger pain feeling in my gut, but not hungry.

This morning has been cooler than the past 3 days, but remains hot 25C at 10am with a RH13.7%, and we hade a few drops fall yesterday afternoon.

I have been put in contact with a group in South Africa (Men with Lupus) and they have given some information, and that I shouldn't soley rely on GP for treatment, and they highly advise going to a Rheumatologist. The closest one being Johannesburg 1000km away, and then there is an internist in Windhoek that also does Rheumatology.The problem I now face is the cost of getting to Windhoek, and the cost of the treatement and tests, as this is not paid by the Medical Aid, as out of country treatment is only paid with preapproval, and this is increadibly difficult to get as one is passed from one to the other when calling them, It is so difficult to deal with corporates no matter what industry.

 
     
16/09/2024 I have awoken this morning with very little pain, I would describe it more as discomfort rather than pain, with the only pain being in my foot (gout like). I am however super exhaused and shakey today with such low energy levels that its even a struggle to keep my eye lids open, not that Im sleepy tired, and my mental state is super low again this morning. It would seem my mental state is linked to the level of exhaustion I feel. The more exhaused I feel the lower my mental state is.

I can't even express how much effort it takes to do simple tasks whilst I have this low energy shakey feeling.

I know each entry sounds much the same, but this blog is serving two purposes, letting you all know how I feel, but also a symptom tracker for my own use, with the doctors.

This way when I visit the doc I can pull this up and show him how Ive fealt that day, and we can track the progress. Since Im not doing much daily, there is not much to report back on other than the health side of things.

12:21 My eyesight has gotten quite blurry all of a sudden.

 
     
15/09/2024

I have awoken with little pain probably 2/10, but the exhausted feeling 8/10, I have a feeling in my tummy that Ive had before, mostly when sick with fly or a tummy bug, the drained feeling feels like its cored at the belly area(I don't know how to explain it) I have microvibration throughout my whole body this morning, my energy is so low it feels like I need to pick up a ton just to move my arms and my legs, my eyesight is also quite blurry today again. The upside is I have very little pain, a little in my back and a little in my left foot (Gout Like) Hopefully the exhausted feeling will subside a little.

I havn't had the energy to travel the 10km to the "plot" this weekend, so havn't been back out, I will hopefully be out there to set the corner stays in the comming days as and when I feel up to getting there. It is super hot these couple of days with indoor temps as high as 39C, and as the heat increases, the more drained Ive been feeling. It is also a very dry heat, sucking the energy out of anyone (Current Humidity Level is 6%) so even when in a cool environment like an airconditioned room you can still feel energy draining as you loose moisture to the air, it's quite draining.

Last night I smoked a sheep rib for dinner, smoking meats is a lazy way of cooking, having to only tend to the fire now and then so that it maintains a good temperature and clean smoke. Turned out quite good, ideally a longer took time with more moisture in the smoker would have made it more tender, but was good none the less.


Bellow is a short video on our Urban lots garden, this is much of what I would like to do on a larger scale out on the Agri-plot.

I have been growing vegitables as far back as I can remember, and have always had a green thumb. The kalahari not the most conducive environment for production, however we have managed to produce up to 90% of our vegitables in the past. As I have gotten more ill this number has come down to 0% , and has been slowly on the increase again, we now producing about 50% of our own vegitables. We have faced a few challenges over the last year, one being last summers temperatures that exceeded 45C on some days, resulted in crop losses. We also have a huge issue with root knot nemtodes, and since the property is too small to allow propper rest periods, I have resorted to cover crops, and or solarization of the soil. It is still very bad in some spots, and production is affected substantially.

During covid lockdown, the garden produced 100% of our greens, and we only left the premises where work was necessitated, and that is also when we ended up getting items that were needed other than the veg, we were fortunate to have a steady supply of meat from in-laws farm.

My intention is to be virtually self sufficient in food production producing much of our own grains, greens and meats, the agricultural property is only 10ha, however we would be able to make a good dent in our food requirements on the property, we should easily produce our own poultry, and vegitables, the red meats would be more of a challenge, and we would have to produce food to feed them if we don't want to rely on grains and store bought foods for them.

I intend on starting on the vegitable productions first, as this will be the start of our cycle to feed the soil, and the animals. Greens will be used for food, and excess waste will be used to feed the poultry and the poultry feed the soil. I will also produce some grains like maize and barley, which will be used to feed small stock and possbily a milk cow depending on how easy it is to produce enough food for her. I will be looking at smaller breeds, that are suitable for our hot climate, like the Ngunis, they are not best known for milk production however 1 cow would cover our daily needs and some.

The idea is to get the AgriPlot up and running, and in production, and then it can pay to build a small house for use to move the the urban setting. The urban setting being that we are located near 3 bars, means we have very little restful sleep. The thump thump all through the night keeps us awake, and as a result doesn't help with the lupus symptoms, since sleep is required to heal. I also don't think the daily smoke (many using open fires to heat and cook especially in winter) helps much either. Cold winter mornings we have a fog like haze caused by the smoke that hangs in the air. Air quality is quite low, and being in the Kalahari one would think that we would have of the cleanest air, but not when plastics and other petroleum products are being burned as fuel. One can sometimes smell the noxious smoke from the plastic burning, and it burns ones eyes.
So getting out to the Agri Plot is one of my first goals for healing, to get away from the noise and noxious smoke.

 
     
14/09/2024

I have awoken with stuffy nose and sore throat this morning, my eyesight is super blurry, my body aches quite a bit, legs feel heavy and upper arms too. chest feels tight and breathing hurts again, skin feels super dry on my face and hands, and my fingers are super raw feeling this morning, but this has been coming on for a few days now. Yesterday was the first headache I have had since being on the cortisone, it was not super bad, could be due to heat, as it was 38.2C indoors so what was the outdoor in the sun temp. I have had my meds increased, both the Anti-Depressants, as well as cortisone. My mind seems clearer this morning less foggy but don't feel I can do much today.

I at least managed to sleep last night, a welcome rest since I didn't sleep much the night before.

I am going to be taking it easy this weekend, we will be going out to the property to be wet the concret pours so that it does not cure to quickly, as the longer it cures the stronger it will be.

 

 
     
13/09/2024

I didn't get much sleep last night, medication causig insomnia, but got up with not much pain, so I decided Ill go plant the corner poles on the "plot"

I didn't get much done in the morning except getting all the tools together. There is no power out on the property, so fueled up Generator, loaded the concrete mixer, level and so on, along with 4 corner poles, then waited till after lunch when the labourer would return.

After lunch we headed out to the property, luckily holes were already dug the previous week. We setup the concret mixer and got to work, thankfully the labourer Jacob was around to do much of the heavy lifting cos I sure couldnt. I was at this point to exhausted already, but we pushed on, and managed to pour the concrete round the posts. 4 Corner posts in, curing. Next week is 8 Stabalizer posts, to help support the corners when straiing the steel wire.

What do they say, Rome wasn't built in a day. I will have to take it easy for a day or 2, sun makes the condition worse and on top of it today our indoor maximum temperature was 38.2C, and I got more than enough of the African sun today. Covering up helps, but still feel scorched eventhough I wet my clothes while I work.. I am super tired, but for some reason switching off is just not happening.

It would seem Im now plagued with the side affects of the cortisone, causing the insomnia. Meds help for the inflamtion, but how does one heal without any sleep, seems its going to be a hard battle, and on top anything I do seems to need to go outdoors into the sun. We will eventually get there, step by step, one foot infront of the other. Slow and Steady.

Again thank you, to each and everyone that has made the contribution we would not be concreting poles yet without your help. Not too long and we will be able to start preparing planting beds.

 

 
     
12/09/2024

I have woken up with a little more pain than yesterday, but my mental state is much better this morning for some reason. It may be meds are starting to work, I have quite a bit of gout like pain in my feet, knees and hips, still have tight heavy chest feeling and breathing still sore, but improved slightly from yesterday. It would seem the cortisone is slowly working, I am moving about more easily and moving is less painful. I havn't had a full headache since being on the cortisone, I have had days where it felt it would be starting then went away. My eyesight seems to be a little more stable, and havnt had to wear eye glasses in 3 days, although I probably would benifit wearing reading glasses at the computer.

Thanks to the donations from you all, the we are now going to get some of whats needed, and I hope to have enough energy to be able to concrete the corner poles in the ground in the comming days. We are going out later to make the purchase of the poles.

Thank you again, photos will follow soon

While this morning I felt quite OK, the heat of the day set in 34.5C indoors, and I have quickly depleted energy. I don't have alot of pain, but I really feel bushed, I have little to no energy, and my body is just saying stay put, I have taken an electolyte mix in the hope this will make me feel better.

I did manage to get the poles for the corner posts, so I will as energy allows, take out the concrete mixer and start fixing them in place.

Again thank you for the contributions, Family, Friends, Friends of familiy, and their friends. It is making a big diffirence in getting the "plot" setup, and ultimatly a little bit of peace where I hopefuly can heal.

 

 


 

 
     
11/09/2024

Today has started to be quite an OK day, pain is not that bad, with a little down my back going into legs, I still have a tight chest with a squeeze like sensation, my head feels clearer today, the lead like feeling is much lower today, overall I feel much better today. I hope it stays that way through the day.

I am off to the "plot" what we call the agricultural holding today as I have a little work to do on a neighbors property, so will pass by and see what I can do re. the fencing.

I think we have enough now to do complete the fencing, once we start digging the post holes, Ill start taking more pictures. Again thank you to all the contributors, this is putting us on a fast path to get the Agri Plot producing, thus getting me closer to stop doing the stressful ISP work Ive been doing for the last 20 years. The next project after the fencing has been completed will be the provision of power to enable us to run the water pumps.

 

 

09/09/2024
First Post


 

This will be the home of my new blog, where I will post my upcoming goals, how Ive been feeling health wise, how my general mental state is etc.

I hope to be able to share as much as I can with you all, but this will be a slow process to start everything up.

I will attempt to update regularly. Currently this is a static page, and will be editing the site as my mental state will allow me to concentrate to complete the site, add more images, and improve the aesthetics.

The date today is 09/09/2024:

Today has started to be an OK day, I have been feeling a little feverish, and medium level of fatigue. The heat has been building daily yesterday was over 32C. The heat seems to drain the energy from the body,

I have quite a shakey feeling, if I can try and and describe it, it feels like very cell in the body has a micro vibration, this shakey feeling ends up draining one of energy, and eventually I cant beat the fatigue.

Pain levels today are moderate, which means I can get up and move about albeit slowly and cautiously.

This meant that I could go out to my test garden and check on the state, the Barley crop is comming along quite nicely, not much but the garden will be producing the seed for the next planting. Already with the few ears that have been harvested, we have more seed that what we started with. Since the area (Kalahari Desert) is not a food production area seeds are hard to come by. I managed to get a few seeds from a bag of chicken feed a couple of years back, and grew them out, this then produced my seed starter. I am now going to grow my seed volume, so as to plant on larger scale our agricultural holdings that you all are helping to build.. The test garden is located on our urban lot, where we have been able to grow enough to produce much of our vegitable needs seasonally. At a stage it was producing almost 100% of our vegitable needs. This reduced as I got sicker and was able to do less and less.

A portion of our production area on our urban lot.
Another Angle a little later in the season.

Growing of food is a high priority for me, as I require good healthy foods, free of pestacides and residues, this is something that is virtually nonexistant in our area, where one doesn't find many organic certified products in stores.

I now have a goal to plant such that I can grow 100% of our vegetables ourselves, using organic controls. We have run into an issue of nematodes, and this we still struggle with. Currenlty we have not been able to find an organic control for this problem. We are attempting solarisation, as well as using heat treatments. It is most likely due to lack of resting, as the size of the lot meant we couldn't rest areas, and we have now started to use other portions of the lot previously used for lawn parking space etc. I now have a shade net tunnel, which produces quite abundantly. It produced in excess of 5kg strawberries over the 2022 season in a 2.5sqm, of which we made jams, syrups, and even wine.

I don't drink, for obvious reasons, my liver being affected by iron overload means that I am alcohol intollerant and I physically get sick when having alcohol...a glass here and there or a taste I can stomach, but can't drink more than that.
Even as a non drinker I am super proud of my attempt at making fruit vino.

The taste of the wine, was reminisant of a semi-sweet rosè, the strawberry notes don't come through all that strong, and I will make a change to the recipe to bring out more strawberry, one suggestion that I had gotten was to put frozen strawberries in secondary.(the second stage where wine is clarifying, and loosing sediment as well as degassing)

Even though it wasn't 100% what I was aiming for, for a first attempt at a strawberry wine, following instinct and not a recipe, and only my 2nd or 3rd attempt at making wine, it turned out very drinkable.

This is one of the many things I do with any excess fruits I get, and I ferment many vegitables or pickle excess.


I will save some of the vegi garden stories for a later post, and I will possibly even make a sub-blog on wine making at home. I am sure followers could easily make a home made wine, that is very drinkable at much cheaper than store bought with no sulphites or preservatives that give the wine the bad rep for hangovers.

 
 

Time: 12:55 09/09/2024 (Update on symptoms Im Facing today)

As the day has progressed, the fever has been getting worse, but so has the heat it is now 32C indoors, and I feel absolulty bushed, the feeling of micro vibrations, have gotten worse, my breathing becoming more laboured, and an effort with each breath as it hurts to take a breath, the pain concentrated around the solarplexis area and down the ribs. My eyesight gradually getting blurier as well, other pain today seems to be to lesser degree, still painful.

I have noticed that after taking the cortisone tablets, it gives me the sense of fever, burning eyes associated with the fever, while it reduces the other pains a little, it comes with its down sides too. The leg pains have reduced since being on cortisone, and so too have the back pains, but back is still quite painful.The warmer it gets the more drained Im feeling, don't have much energy to go outdoors, but then again the sun feels like its roasting when I do go outside, Ill rest up till it cools down, and see what later afternoon holds.