Perhaps @Jola13 make sure your medical team are aware of your symptoms, their intensity and impact on your life and how you are finding your medication regime.
Please do look after yourself and be kind to yourself
Seeing them tomorrow
Jola Denby-Ashe
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@Jola13 Please do let us know how you get on tomorrow.
Take care
Hi Erica
I have been in agony as you know over the last week.
I saw the Nurse two days ago for BT and my specialist nurse rang me yesterday. we discussed m pain and deduced it came back since I came off Diclofenac 50mg x2. I had been on Arcoxia before since 2012 but my potassium levels went off scale at the start of this years and was advised to stop. As soon as I did the pain came back with a vengeance. (Bearing in mind I have a compromised sympathetic nervous system due to a dural tear in 2012, at the time I also had a subarachnoid bleed and Bac meningitis following complicated back surgery.)
The nurse will talk with the consultant to se if I can go back on Diclofenac as Im already on Aspirin 75mg - the concern is internal bleeding. In the meantime I took one last nigh and another this morning and I feel brilliant. Have informed my GP too to see if we can come up with a monitoring plan or other meds which I can take with everything else. My platelets were 868 then 659 now 685 this is since starting HU my RDW is 17 ā¦
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Wow, @Jola13 what a difference with just 2 tablets, yes, good idea to keep everyone in the loop.
Look after yourself and please keep posting.
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Thank you Jilly20 for your insight into the fatigue with Essential thrombocythemia (ET) issue. I hadnāt realise how important hydration was until there were a couple of days when I was not at home and didnāt have my water bottle and it really knocked me for 6.
I must try to plan better but thank you for showing that it is the lack of water causing the problem
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Good evening Duncan, hope your fatigue has eased some now. I absolutely feel your frustration about the difficulty in explaining to others just how debilitating fatigue is.
I was diagnosed a little over 5 years ago with Essential thrombocythemia (ET) (CAL-R+Type1), following on from blood tests, too numerous to recall, after suffering a heart attack 6 months earlier. Iām on Pegasys injections, and have been since April 2018 now, and it still feels āwrongā to be sticking pins in myself, although the target area seems to be bigger these days!
I now find even everyday tasks quite daunting as my energy levels are so low. I think that the worst part for me is the constant tiredness coupled with poor sleeping patterns. I am now at the point of considering early retirement at the ripe old age of 58. This isnāt something that I have ever entertained and expected to be working for another 9 years yet, but if I can make the figures work, along with a downsize, then I think that that is where my future lies.
Iāve been through the Sleep Apnoea Clinic with inconclusive results, as well as having a recent ultrasound scan for my enlarged liver and spleen and will be back at Leicester Royal Infirmary on the 25th of August to see how good, or otherwise, my blood work is along with the scan results.
Such is life.
Take care all, and stay safe, and keep on smiling.
Best Wishes,
Jimbo165
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Howdy @Jimbo165, thank you so much for your empathy. So sorry to hear that you live with these issues, but how resilient you must be now! Although I donāt have apnoea, my other half does and so vicariously I can sympathise with how tough that must be, and how it impacts your energy and concentration on top of the fatigue. What a drain! Donāt know if youāve tried altering your diet to see if that helps the apnoea, but cutting down on dairy seems to help reduce apnoea symptoms AKA shuddering snoring in my household!
Really sorry to hear that you had a heart attack too. I survived one a decade ago and wonder now if that was a very early sign of the Polycythaemia vera (PV) Iāve recently been diagnosed with, what with the blood clotting issues related to both. My cardiologist back then didnāt mention anything about blood disorders and I donāt think any tests were done (if the JAK2 gene mutation test was even available then), but I canāt help but feel now that theyāre linked.
Yes this fatigue is definitely my worst symptom, itās really getting me down. I live with PTSD and over the years have figured out ways to deal with its inherent volatile anxiety whilst still getting out and about, hiking, seeing films, attending concerts and so on, but this fatigue is making it harder to engage in my favourite activities, and the diagnosis of Polycythaemia vera (PV) has obviously caused ongoing anxiety flare-ups. Meant to go to a gig yesterday Iād been looking forward to for yonks and flaked out instead and then felt angry at my rubbish fatigue. But at least I rested and then got some stuff done at home instead, including trying a new maple syrup and peanut butter vegan ice cream recipe!
Itās good that you might be in the position to retire earlier than planned. Perhaps āallowingā yourself to consider that, even if you donāt go ahead with it, frees up some space to think about what else you could do with your time if you leave work? Downsizing might include other changes like a move somewhere more manageable, and as they say change is as good as a rest! And we survivors need all the rest we can, right?!
Iāll be thinking of you and your tests and Iāll keep my fingers crossed that you get great results, @Jimbo165. Thanks again for your kind words and empathy!
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Hi Duncan, and thank you for your kind response. Yes, I too get angry with myself for being so weak, then get annoyed with myself for having become angry and foolish about my health!
Sadly itās been a rough, tough, and sooooo tiring last few months and the last week or so has given me a very firm āprodā in the direction of giving up work. I do feel that for the last few years Iāve been fooling myself and mostly āliving to workā rather than the other way round, but I mostly enjoy my job and I work with a few wonderful people who are great and supportive friends and I will be sad to leave them, but my physical health is the first step towards better mental health, I think. Also, that last sentence was a bit deep for me, thank goodness it is Sunday evening!
Iām considering a move to the Lincolnshire coast as I always seem to sleep better near the sea, and it isnāt that far away from my four daughters in the Midlands, and if Iām no longer working I will have the time (and energy!) to see them all every month. I must be serious about these thoughts as Iāve just been looking at which hospitals would be closest to my potential new home town! I can see some time on the phone to one of my Pension Providers tomorrow, just wish I had worked for Royal Mail for longer back in the 80ās and 90ās!
I often finish my Forum contributions with the phrase āRemember to be kind to yourselvesā and then promptly ignore my own advice, but I shall try to be kind to myself this time.
Take care and stay safe.
Jimbo165
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Oh @Jimbo165 I am so glad that there is someone else that ignores their own advice !!!
A move to the Lincolnshire coast seems idyllic and yes a sign of our lives to see which hospitals are near and how to get there.
I am fortunate to have a bus right outside my door that goes to my local hospital.
Yep, I am guilty of living to work too. Actually after my diagnosis I worked, slept and ran a home. It was the best thing I managed to do was to get myself made redundant!!
I really enjoyed my job before my diagnosis, I didnāt afterwards,
Lots of changes afoot for you, take it steady.
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Good Morning @Erica, thank you for your kind response. I am one of those (in my humble opinion!) who are good at tending to, caring for and helping everyone else, but completely useless at doing so for myself, unless my daughters get involved and tell me off (in a nice way!!), as they have done now! Iām currently off work with overwhelming fatigue and āon holdā on the phone to my Doctors Practice to try and get an appointment (22 minutes and counting as I type).
Oh well, lets see where the near future takes me.
Take care all, stay safe, keep on smiling and be kind to yourselves everyone.
Best wishes,
Jimbo165
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After 35 minutes on hold I finally got through to the receptionist who said āI canāt hear youā and promptly hung up! Iāve been unable to get through since. It is a good job that us patients have patience!
I shall make another attempt after lunch and will update you all later.
Take care and stay safe (and dry!).
Jimbo165
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Good evening all, I that hope everyone is well.
I finally managed to get through to my Doctors Practice, and the call was as clear as a bell this time too. My GP rang back later on this afternoon and after a good chat I will be going for yet more blood tests tomorrow afternoon, and he has (probably correctly) signed me off of work for the next two weeks.
We also touched on my possible move away and he has recommended a āyesā to that if I can make it work financially.
To that end, I will be going to view a property on the Lincolnshire coast on Wednesday, accompanied by my youngest daughter, so fingers crossed and lets see were the next chapter/adventure takes place.
Take care everyone, and stay safe too.
Jimbo165
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Oh @Jimbo165 what a day you have had.
I am glad that you have been signed off work for 2 weeks.
Your post oozes positivity, letās see what Wednesday brings.
Fingers and toes crossed for you.
Take care
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Good evening @Erica, and thank you for your kind response. I try to be positive and upbeat all of the time, and it is a good indication to my daughters, and close friends at work, as to how well, or not, I am feeling. Apparently I often wear my heart (whatās left of it!) and my emotional state on my sleeve. I am certainly very open about my condition as I donāt see it as anything to be ashamed of.
Iāll let you know how my coastal odyssey goes.
Take care and stay safe.
Jimbo165
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Hi @Jimbo165.
It sounds like youāve had a really productive day and how exciting that you are now clear on where you want to be.
I hope the viewing goes well and that the results of bloods donāt involve to much waiting around.
Please keep us updated on the move and your health.
Take care
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This all sounds great, @Jimbo165! Hoping those blood test results come back with good news too, but try to enjoy your time off regardless. Funny how when we allow ourselves to imagine a big life change it can sometimes start the ball rolling so swiftly and then suddenly itās all going ahead! My last house move started off as a daydream and sort of fantasy of where would I be happier living than where I was and then lo! Coastal living and fresh sea air every day, bliss! Just knowing Iām at the edge of the land and the horizon opens up all expansively over the sea feels kind of freeing for me and I sleep better than ever. I hope that whatever occurs works out for you, but it does sound like youāre on the move to a beautiful place.
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Hi @Duncan . Sorry for delayed reply, but I have not been too well lately. I wonāt be recommending any particular research papers, as I think you will learn more by finding your own way through finding out more knowledge of natural remedies. The word remedy is slightly misleading in itself, as it makes it sound like a cure all, which it is not. Be open minded when you read information, as some of it will be a sales pitch, and some will be very helpful. Cross reference as much as possible Not enough research has been done on natural remedies to form a definitive conclusion, and also you will find that there are conflicting views of each product. However, used wisely, and with medical backing, taking into consideration any prescription medications and diagnoses, they can be beneficial, but also can be harmful. Good luck with your research.
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Sorry to hear you havenāt been too well, @Chris1, hopefully youāre on the mend now though. Thank you so much for getting back to me and your suggestion to learn more about natural remedies. Back in my youth when I was finding my way through veganism when supermarkets barely even sold soya milk, I used essential oils and yoga and so on which were called complementary medicine. Now ānaturalā appears to be the catch-all term for anything, food or remedy, not prescribed by medical professionals that has some kind of healthy quality! I note that the term ānaturalā doesnāt have any strict definition and so anything can be marketed as a natural remedy without necessarily being tested for efficacy like medicines.
I tend towards using herbal remedies based on what is proven to work, and sadly the efficacy of some of these ācomplementary medicinesā have been disproven through thorough research, like homeopathy which I used to use. Aromatherapy definitely helps me though and I continue to use essential oils for aches and pains and occasional luxurious baths, even sometimes topically with lavender on bites and spots (although most other essential oils shouldnāt be used directly on skin, if my understanding is still accurate).
However, since my heart attack Iāve had to concede to medical science to keep me from having another near-death experience or worse, and have so far succeeded thanks to merely adding aspirin to my active lifestyle. Now it seems with this blood disorder I have, Polycythaemia vera (PV), that using both old-fashioned blood-letting and cutting-edge medicine like chemotherapy will prolong my life. Iām having to juggle the nuance of tolerating both natural and unnatural treatment. Itās a lot!
As a vegan I value all lifeforms and have spent most of my adulthood seeking to minimise my negative impact on this planet. It has troubled me greatly that the medicine I use has likely been tested on animals which I find incredibly cruel. But I am alive due to this and value my life. So itās a tricky balance which Iāll probably never feel entirely comfortable with. While wanting to take as few medicines as possible, I have to rely on scientists figuring out which treatments are going to improve my health because their work is researched and statistical and based on recording their findings. My doctor and I talk about this regularly and sheās very supportive of me using as many herbal remedies as I want, but unfortunately there comes a time when only medicine is shown to do the job.
So I wish, like you, that more research would be done on natural treatments from around the world so there is better medical consensus on which non-medicinal remedies are actually as effective or moreso than the medical model suggests. For example, an ancient healing technique that is finally being researched properly is the use of psychedelics such as psilocybin, with specialist guidance, to treat severe mental health issues like depression and PTSD. Another one is forest-bathing or simply getting out into nature as a form of therapy that can be prescribed, no medicine necessary. Iāll keep reading research to see if I can find other natural ways to treat all this real life stuff!
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Good afternoon all, hope everyone is keeping as well as can be.
Sadly my coastal odyssey wasnāt the success I was hoping it would be, but life does go on.
Equally sadly, my fatigue levels seem to be getting worse at the same time as my energy levels become even lower, but life does go on.
Last weeks blood test results didnāt show anything too out of my ordinary, so my GP is back at the head scratching stage, and āpassing the buckā to my consultant team at Leicester Royal Infirmary, who I am due to see on the 25th of this month, so not long to wait now. There will be more blood tests for that, booked in for the 23rd, and that will be almost 3 weeks since my last Pegasys injection.
Iāve also had the results from my Sleep Apnoea trials, conducted back in March. The results were inconclusive, and contradictory, all at the same time.
On a positive note, the weather has picked up some today and, if I feel āokayā tomorrow, I shall do the 200 mile round trip to and visit my 96 year old in Huddersfield. Proof, if proof were needed, that life does indeed go on!
Stay safe and take care everyone, and remember to be kind to yourselves.
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