Oh @Jimbo165, I was thinking about you this weekend and nearly asked after you. Sounds like a really tough time you’ve been experiencing. I’m pulling an angry face and shaking a fist at your predicament!
Enjoy the warmth as you do your gardening, but don’t forget sun lotion, drinking water, and rest. Maybe you could have some day naps during your holiday, I love the occasional catnap when time allows. It is meant to be a holiday, after all!
Have you taken your fatigue and other ailments to your GP or haematology folks? Might be worth ruling out anything else going on. That fatigue might be a symptom of other stuff that’s causing it separate from the dratted Myeloproliferative neoplasms (MPN).
Anyway, enjoy your rest and recuperation and really sunny weather, @Jimbo165. Time to put on some shades and sip delicious iced drinks, methinks!
Good evening/afternoon @Duncan, and thank you for your kind words and thoughts. I think that the recent times, and how I have been feeling during them, come under a heading that would get me banned from the forum!
Th garden is 90% done now, although I have taken it easier today and done some extra cerebral work and have now set my Will and LPA in motion, both of which feel slightly surreal and overly real at the same time, if that makes sense. That is two “big ticket” items ticked off of my 2024 “to-do” list, so I have a slight feeling of achievement, assuming that neither or both of those items are returned with faults on them!
I have some interesting tan lines just now, as there is a section of my back that I can’t reach, but I always better with a bit of a tan!
Oh yes, the medical fraternity are aware of my fatigue levels and the impact that it is having on my life, but can only scratch there collective heads as to anything that will help other than the usual “try to do more exercise, and cut down on your working hours” neither of which are easy to accomplish.
I did see my chiropodist today who used some new (to me) tech equipment to check the blood flow through my feet. Fortunately there is still blood flowing, and quite well at that, through both of my feet, but the heels seem to be quite insensitive to the touch. No idea what, if anything, that signifies though.
As always, take care, stay safe, be kind to yourself and remember to keep on smiling.
Oh @Jimbo165 nobody is going to ban you from the forum with a smile like that and I think this is the one place I can really say how it is for me.
Yes, I have done my will and LPA and I felt a great deal of relief and achievement afterwards, however it had been on a few years 'to do; list I have to admit.
I have paperwork coming out of my ears, I ran out of staplers in my stapler tonight, nearly final straw moment.
Thank you for telling me to stay first, yes, I really should not be in charge of a stapler I know.
Yes, I am keeping smiling though, be kind to yourself and I am impressed with your gardening expertise.
Hello @Erica, and thank you for not banning me (yet)!
I hope that you are able to get a further supply of staples tomorrow now that you have got the bit between your pearly whites!
My gardening skills are nothing of any great fame to be honest, but I can’t abide weeds growing and a previous occupant here planted some &%$*ing bamboo many years ago and nothing that I do seems to destroy it. I can cut it down to ground level and then a week or two later it is 6’ tall again!!
Tomorrows planned activities include finishing off the garden, a new mobile phone, then some serious resting.
Take care, stay safe and be careful with the stapler!
@Jimbo165 that all just sounds like like you rolled the dice at the truck stop and ordered the full English. May I also point out re your Monty Don landscaping services, they have been rebranded as native flowers, not weeds.
The heel sounds like the gout symptom us Myeloproliferative neoplasms (MPN) are prone to get, though it is worth checking the wear on your work boots. Just realised my heel pain might be down to the wear on the heel from driving.
It is good that you are still able to keep the docs scratching their heads rather than their behinds
Will we be seeing photos of you modelling @Erica 's range of floppy hats in the garden?
Did you hear about the Cottage at Fillongley catching on fire? Luckily my cousin and the rest of the family got out in time.
As for resting, a man with four daughters has no chance of that
Stay safe and just think, each pebble is a naughty word that @Erica doesn’t have to hear. You been missed on here
Ha I can well imagine some of the terms you might use to describe recent times! Those sorts of days are familiar to me and all I can say is stick with it and another day will come and maybe it’ll be less #%*&!!!
So brave that you and dear @Erica have got that paperwork sorted out, although I bet it took a lot of soul-searching to face it. No wonder it seems surreal and a relief! I’m realising that now is as good a time as any to start thinking about my own will, it’s probably overly complicated over here for an immigrant, so that can be added to my long list of bureaucratic avoidance for now.
Apparently bamboo is considered a weed and can be rather invasive depending on the variety, even growing up through buildings as it can have a really dense root structure. I was lucky enough to eat bamboo shoots in Japan as it’s commonly foraged for its delicious inside, kind of like sweet water chestnut in taste and texture. Maybe you could find out if you’ve got an edible and/or invasive type?
Keeping my fingers crossed that your fatigue really improves either with treatment or of its own accord. Feeling bonus fatigue myself at the mo, it’s a real drag. It’s great that your feet still have blood circulation though, maybe putting them up for a well-earned break will increase the flow! Enjoy your garden and the rest of your holiday, @Jimbo165.
Good afternoon @clickinhistory, and everyone else, I’m glad to hear that your relatives are safe; that ordeal must have been a terrible shock to them. I wasn’t aware of the incident but have read about it now.
I wear a good pair of orthopedic insoles in my work boots as well as a set in my comfy slippers for at home. My trainers have high arch supports in as standard (only Karrimor ones for me - other brands are available!). My Chiropodist has said that I have got slightly flat feet, with my left on being worse, which ties in with the extra difficulties on that side.
I’ve been out of the family home for over decade now, but still see my multitudinous daughters regularly and in contact with them all often too. My lack of resting is entirely down to my own inability to plonk my posterior down and to let the world go by, unless I am by the seaside, when I can. This trait of mine just further reinforces the fact that I am “a strange one!”.
I shall do my best to not be AWOL from the site again.
Take care, stay safe and look after yourselves everybody.
Hi @Duncan, my bamboo looks very much like the stuff that garden canes are made from, just a little greener. And it is almost impossible to dig the root system out of the ground without resorting to either a JCB (other excavator brands are available!) or dynamite, both of which will upset the neighbours as well as the environment. I shall just have to see, and hope, that my efforts with the digging out, weedkiller application, weed control membrane and the Limestone chippings will do the trick.
Ahem…any of your locals who tell you that you are an immigrant just inform them that you have come over to see the West Coast before heading East to see about reclaiming the 13 original rebellious Colonies!
Oh you’re totally onto that bamboo with all sorts of expert tricks, @Jimbo165! Bamboo roots are such a bane. Hopefully your efforts to remove it all will soon come to fruition
Ha yes I can’t really hide that I’m not from here as the moment I say anything I blow my cover! I was once in a café when the barista guessed correctly where in the UK I’m from which was mightily impressive as I don’t even have that accent!
Glad to read that your plantar fasciitis isn’t so bad now. I’m a firm believer in wearing good insoles whenever possible as they really can affect the rest of you, like you say. Long may you be sturdy on your feet!
@Jimbo165 oh dear, it seems your bamboo issue will require a healthy diet of visiting the local chippy bamboo root removal - Google Search hard, but I am sure you will rise to the challenge.
That is why I always grew the bamboo in pots. An old gardener once said, look at a tree and you see a blade of grass with ambition, look at bamboo, you see a toddler let loose inn a toy shop
Hope you got to enjoy some of the week off
I put the lack of sitting still to having four daughters, you are less of a sitting target for them
I took a drive past “The Cottage” yesterday and was sorry to see the state of the place. Your relatives were very lucky to get out safely and in one piece.
As regards resting, I’ve been able to do some resting the last day or so and, having been visited by Daughter No4 this morning (and told off for overdoing things in the garden!). She clearly has then spoken with Daughter No1 who called to tell me off as well! I think they love me really.
I shall be resting for much of the remainder of the weekend before resuming “action stations” back at work on Monday.
Take care all, stay safe and look after yourselves.
Hi @Jimbo165 I definitely prescribe (I am non medical) a restful weekend.
Thank your lucky stars you only have 4 daughters to tell you off.
I have one son, living 25 mins walk away, and my problem is getting him to contact us or pop round, I go on the principle that ‘no news is good news’.
However if we needed him for something he would appear.
Rest while you can, I call it self care
Hi there I was diagnosed with Essential thrombocythemia (ET) at the age of 25.
After having routine bloods for an operation I was due to have. They wouldn’t allow me the op until they figured what was wrong with me.
I had a bone marrow biopsy and aspiration and was diagnosed with Essential thrombocythemia (ET). I was told to have aspirin every day. I was kept an eye on closely as I was fairly young for this diagnosis. In 2016 I had my forth child after having 3 miscarriages in a row after having 3 children previously before my diagnosis. I think Essential thrombocythemia (ET) didn’t allow me to carry successfully, with my 4th I was put on clexane from the get go and had my baby boy although he came with a host of cardiac issues. However subsequently my pregnancy seemed to help with my platelets. I was still having regular checkups after for a while but I’ve not been seen for 6/7 years now.
I have uncontrolled high bp which no one knows the cause of I think it’s my Essential thrombocythemia (ET) but many drs and consultants at the hospital haven’t put the 2 together. I take bp meds but my bp is still high. I also have bruising on the back of my legs the comes and goes in the same place.
I’m also pre menopausal now too have insomnia, headaches lots of different types of tingling in hands feet and legs. I’m also weary of the 20 year marker I’m 40 now and it does worry me that I’ve not been checked on for so long regarding this. Trying to talk to someone about it tho is not easy as anything I ask never gets answered and I just get forgotten about again.
I figure while my son is ok atm I need to start looking after my own health.
Hello @Cazzyj44 - sorry to hear the difficulties you have had over the years and not feeling so good right now too - I am also diagnosed with Essential thrombocythemia (ET) for some 18 years now - all the bits you mention are very much “Essential thrombocythemia (ET) things” and you really need to be under the wings of the haematology team again with someone experienced in MPNs just for a check on how things are now and to be kept a check on going forward, with may be some input about treatment when and if it is required. Are you able to contact the team you were under before or probably easier to ask your GP for a referral to haematology. Anyone with a bone marrow proven diagnosis should be under the care of a haem team on a regular basis and as you say 6-7 years is way too long to not have been checked - it should be done regularly even when treatment is not needed. Do chat to your GP and get a referral and let us know how you get on.
Hi @Cazzyj44 thanks for having the courage to post such an honest post.
It sounds as if you have had a lot going on and been on an emotional roller coaster over the last 18 yrs.
Yes, I reckon that your health is equally important to everyone else’s. @Jilly20 has shared her experiences for you.
Perhaps the GP is the way to go to get a referral.
You say how difficult it is to get answers and feel forgotten about well my trick is to clearly write down what I want to say before an appointment and then be pleasantly assertive, say what you need to and not leave the office until you have the answers you want.
Medical Services I keep on hearing should be patient led.
Please do let us know how you get on.
Really look after and be kind to yourself
