#ive been typing for so long but i don't feel fatigued it really shows how far ive gotten these last few years

[cextra-loz]

Today I was able to stand for a new limit of 50 minutes when my physical symptoms are at their most minimal in a controlled environment. So we know 50 is the max now we're trying to reach 1 hour. I feel like I could've reached an hour with how I was feeling but the muscle endurance in my legs wouldn't have let me. I'm reaching a weird stage in my progress where its been so long since my body has had to support my weight for that long the blood pooling in my soles irritates and hurts like hell the days afterwards so now i'm rubbing the my feet like i've worked a hard day to prevent the inflammation from impeding my progress. I feel tho if I can reach that 1 hour limit I can reach longer times with practice. Its been years since i've stood for so long i'm really excited to keep practicing and hopefully keep improving. Last year around this time I was barely reaching 35 maybe 40 if I really really pushed- during my least symptomatic hours. Those extra 10 minutes might not mean much but since the beginning of my illness I never imagined i'd be able to make it to 30 let alone 50. I felt pretty good this session too which is the most important part, I feel like its the lack of muscular stamina that held me back rather than cardiac endurance. Anyway update is over, if I reach that 1 hour time it'll be a happy day I cannot tell how long it'll take me to reach that time but with some more practice I think a few weeks or months at least i'd imagine maybe even sooner. I'm so happy lets go! Dreams do come true at least 4 me ehehe!

#pots #dysautonomia #progress #the best thing about longer uptime means more endurance - the longer i'm able to stay up the more my legs should begin to adapt #if I can push the amount of time when i'm not as symptomatic maybe it'll help increase my endurance when i'm most symptomatic #when i'm at my most symptomatic I cannot stand for the life of me more than a minute #i will collapse #but increasing my minimal symptomatic time to higher numbers means I feel less physical pain and exhaustion when I am at my most #symptomatic which is honestly all i want #if I can withstand the exhaustion of when i'm most physically ill for more than a minute or two at a time then I can endure it #when i'm compeltely still and laying down which is rlly hard and it hurts like hell and i'm exhausted when it happens #theres nothing in this world like trying to catch your breath while your body is writhing in pain and youre trying not to pass out #i'm just glad on a good day and lots of monitoring i can manage a few hours without any of those #when it was happening once an hour for like hours at a time for months i was in literal hell #the scariest bit is i'm forgetting how it felt to be like normal-ish #like there were days where the most I worried about was like regular stuff like homework #now i'm worried about things like making sure i have a glass of water with me or else i'll die #which sounds absurd but its now my reality its strange how that just becomes real #ive been typing for so long but i don't feel fatigued it really shows how far ive gotten these last few years #last time i wrote this much on a tumblr text post about my illness i was trying to catch my breath the entire time #im kinda happy #ehehe!

[aria-ashryver]

yooooo im SO tired, have a health update 💞

(which was going to be another video update but then a bird came and i got distracted and now im too tired to speak lol. also WOW imagine being so pale you create your own god rays slkdjf)

so, ive been feeling like hot garbage for some time, which is perhaps not surprising with the whole "was poisoned via chemo for a year, is still recovering" thing. Recently my heart has been feeling Not Good TM, and the fatigue waves are getting pretty extreme at times.

So, I followed this up with my doctor, very much expecting it to be a case of "no you're just out of shape / your asthma is playing up / you're just being super lazy, try harder, etc". He booked me a specialised heart test which I had last week.

Uhhh apparently I wasn't just being pathetic! (Which is somewhat gratifying to know that there is a reason things have been so hard lately and it's not just in my head)

There is a thing called your Ejection Fraction, which is essentially a measure of how much oxygenated blood your heart is pumping around your body -- its the factor that keeps you feeling energised.

Mine has dropped. Fairly significantly. When I had the same heart scan in October, mid-way through chemo, I was still retaining a lot of my heart health and muscle mass from when i was pre-chemo, so my EF was sitting at about 80. Which is a sign I was initially quite physically fit (or, to quote my oncologist: "giiiiirl, you a Boston Marathon runner or what?)

Since my last scan, my EF has dropped to 58. Which is still actually higher than average, most people sit at about 55, so I've dropped to an average range lol.

My heart is working, but such a significant jump is still cause for concern. My oncologist said that if I had been less young and fit, it would have been a case of dropping from 55 to somewhere in the 30s, to which he said "you'd struggle to even walk down that corridor at that point."

At this stage, I have a (hopefully reversible!) cardiomyopathy. Unfortunately, reduced heart and lung function can be complications of the two immune therapy drugs I am taking to prevent my cancer from coming back. So the current course of action is to put my immune therapy treatments on hold for 9 weeks to let my heart recover.

Yes, that is a tad spooky, but the drugs have a very long half-life, so I should be okay not taking them for that short period. On the plus side, this should hopefully improve my overall quality of life while my heart heals, and a break from immune therapy will be really nice anyway, because that shit hurts lmao.

Otherwise, the metastatic cancer in my spine and my hips remains stable and is still showing signs of healing because I am AWESOME AND COOL. Oh, and I also had a massive internal lesion (a chemo complication I never mentioned here bc like... if I told you guys every little thing that's wrong with me, we'd be here all day lmao) but that is now healing on its own too!! Woo!

So... ye. Gonna have a nap, knowing that medically my heart is broken and I have yet another reason to take it easy now haha.

Send me lots of "oi don't get cancer again in the next 9 weeks you absolute nugget" type vibes. I don't think I will, I'm not worried, but yk yk vibes are nice 🥰💝💖💓💕🩷💞 if you are still reading, I hope you have a wonderful day!!!

#aria pincushion tally: #complete #look how much hair i have now whoa #i have chemo curls

[mental-health-advice]

Ive been having intrusive thoughts lately of dying, but I don't want to die and it horrifies me each time it comes across my mind. I don't know what to do, I haven't told anyone. I'm too embarrassed to go to anyone and my family is very poor and wouldn't be able to afford anything that might help me. My break downs have been getting worse and more frequent too because of stress and other people. I don't know what to do and I'm scared but just talking about my feelings makes me cry and stress -F

Hi there lovely!

I am so sorry you are having these horrible intrusive thoughts, they can be really hard to deal with. But, well done for reaching out to us for help, this is a really positive step, you should be proud of yourself

Intrusive thoughts can be caused by a lot of things, like OCD, depression, stress. None of us here at MHA are professionals, so we cannot diagnose you or give you a treatment which is sure to help, anything I suggest here is based on personal experience/opinion! 

I am just wondering what kind of thoughts about dying you are having; are they thoughts about hurting yourself, or about how long you have left to live and mortality? If they are thoughts about hurting yourself, this is likely to me caused by a mental health condition like depression - are you suffering from any of the following symptoms?

Persistently sad, anxious, or empty moods

Loss of pleasure in usual activities

Fatigue or decreased energy

Sleep disturbances

Change in appetite or weight

Thoughts of suicide or death, or suicide attempts

Poor self-image or self-esteem

(source)

If you are, I think it might be worth doing some further research on depression. If you ever feel like hurting yourself, please use distraction techniques and alternatives.  We have a page with alternatives here, a video with emotional alternatives here, a video with physical alternatives here. I think it could also be really useful for you to write a list of all the reasons why you do not want to hurt yourself, and look at it whenever you have an urge; we have an example list here.

OCD is a type of anxiety disorder which is characterised by the suffered facing repetitive thought patterns which cause anxiety and stress, often accompanied by rituals or tasks. Often if there is not something in particular that the brain can begin to obsess over, it will turn to the most basic fear we all have, and that is of death and dying. You may begin obsessing over how long you have left to live, how you will die, what things you should be doing to prevent death for as long as possible.  I am linking you to our page about OCD here! It is also worth remembering that there are different types of OCD (our page here explain some of the forms), so it might be worth you doing some of your own research and looking at whether you feel like you relate to anything described. The following webpages might be helpful for you to read:

NHS

OCD-UK

Intrusive Thoughts.Org

Again, like I said, I am not a professional so cannot tell you exactly what is going on, but I do think there are two things you should maybe consider as possible options. I really recommend that you go and talk to a professional, like a GP or counsellor, about how you are feeling; they will be able to diagnose you, if applicable, and refer you for specialist help and treatment. Here is our page about getting help; it can be really scary to reach out, but you deserve to get any help available to you. I realise you say there may be financial issues in getting help, but there are charities and organisations which offer counselling sessions for free, maybe you could look into some of these in your local area? In terms of crying and getting stressed when talking about how you feel, that is completely normal and is nothing to be ashamed of! Professionals are used to seeing things like that, and understand how hard it is to be open about your struggles!

Something which will hopefully help you, and cost you nothing, are self help methods. Here are some which I find particularly useful:

Avoid caffeine as it can make anxiety worse

Mindfulness

Distractions

Grounding techniques

This 4 step programme

Something else you can try, is when you find yourself facing an intrusive thought, is to stop, acknowledge it, but then challenge it with something like ‘’Do you have any evidence to support that?’’ or sarcastically saying ‘’Wow, what a fab idea that is!!’ By challenging your thoughts, it gives them less power and shows that you are in control. Do you think this is something you can try?

I hope this has been of some help to you, lovely. If there is anything else we can do for you, feel free to get back in touch with us. Take care,

Rhiann xo

#F #mha #advice #advice blog #mental health advice #mharhiann #OCD #intrusive thoughts #depression #suicidal thoughts #death #dying #getting help #getting a diagnosis #self help methods #obsessive compulsive disorder #mental health condition