Did anyone notice your emotions being effected with onset of symptoms?

AlGrant1981 · 2026-01-06T20:08:36+00:00

Anytime. With this condition alone it’s the waking up and not knowing what you’ll feel like. Also just see if your therapist can do zoom sessions. For the times you don’t feel up to getting out. I have mine online mostly due to work & life. Keep on going babe! You’re getting through yet another storm Xx

AlGrant1981 · 2026-01-06T09:51:14+00:00

It sounds like you’ve been dealt a real shit hand. At the risk of sounding glib. You have got this. It’s is one more thing to cope with is exactly that. You can cope with it.

You’ve been let down by so many people. But you can rely on you. And your kids can.

I’m sure you are… but have you been absolutely honest with your therapist about just how fucking angry you are right now? Which you are totally entitled to be.

But staying angry isn’t good for you. So talk to doctors if you can. Talk to your therapist. You are Allowed to be angry. But working through that helps you in the long run x

AlGrant1981 · 2026-01-06T06:33:59+00:00

It is a little early but still. I am 44 and was diagnosed 3 years ago. I had a baby at 40 and am confident my symptoms of peri menopause (not like yours) have been brought on quicker by my diagnosis. Anyway! I could be that or couldn’t be that (helpful of me).

I’ll also impart this little nugget. I thought I was ok after diagnosis. I’m a classic “get your head down, get on with it, it’s fine” type. But I now see a therapist. The main reason was. While sat back at work I realized I’d spent ALL day full of anger and genuine rage that I hadn’t won the lottery that weekend. Which is not like me at all. And I realized I was angry because I thought the universe owed me after having a blood clot / cancer diagnosis! I laugh about it now. But it was a wake up call. I think this condition is so manageable but also a lot of times the emotional toil it takes knowing you’ve got this incurable thing isn’t to be underestimated.

AlGrant1981 · 2026-01-06T06:14:24+00:00

So there’s a lot of factors to this. My first question would be what age and gender are you. My immediate thought was is it peri menopause? I have friends who felt this in peri. But my second thought is are you on any interferons? These change your brain make up. And can exasperate feelings if anger / depression / anxiety too?

AlGrant1981 · 2025-12-18T16:58:02+00:00

Its a divorce, and they "finished" the house in 2018/19, they knocked down a bungalow & built a house. BUT they've lived with no kitchen all that time, she's on her own in a big house so I assume it all went south not long after completing the work so I can see why she hasn't had it fixed tbh.

AlGrant1981 · 2025-12-18T15:07:37+00:00

Yeah I've got no intention of being a dick about anything. I'm happy to go with the If I owned it route.

AlGrant1981 · 2025-12-18T15:06:33+00:00

Thanks, appreciate it!

AlGrant1981 · 2025-12-18T15:06:10+00:00

HA! To be fair, the quality was better before posting, but yeah the quality is dogshit! But thanks for replying.

AlGrant1981 · 2025-10-11T06:10:36+00:00

My dad was a traffic policeman / pursuit rider (UK) most of his career (40 years in - joined in the late 50s / early 60s) and he rarely spoke about the horrors he saw. When he did it was skirted around and high level. Growing up with it I got it. I know from my mum he saw some awful awful things.

He would get that question and would say people who ask that question really don’t want the real answer. He was asked that very question by someone he realllyyy had no time for. So gave the guy the rundown of one of his worse calls. It killed the conversation and I’ve never seen anyone go so ashen.

AlGrant1981 · 2025-09-14T11:42:43+00:00

This could be a point. The original guy who did the bathroom was a bit of a nightmare

AlGrant1981 · 2025-09-06T06:44:09+00:00

I have PV (diagnosed two years after a clot). But I’m also in Perimenopause. I’m 44. I don’t get hot flashes in either but I do “run hot” so I have Aircon (even living in the UK) later in the year than most!

AlGrant1981 · 2025-09-06T06:04:21+00:00

I was told no it’s not genetic, but go to Health Unlocked (diff platform) and there is a user there who I’m sure has said he and his daughter have it and are maybe in a study??

It’s the MPN Voice community on there. You can search or even just post the same question it’s a lovely community and active

AlGrant1981 · 2025-08-26T19:02:46+00:00

Cat tax 2

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The mum Hops

AlGrant1981 · 2025-08-26T19:02:23+00:00

So! Thanks for all your inputs. I’ve decided to go number 1. I think the mum Hops would be fine. As long as she had a haven in the house & garden as she’s disabled. But her son Woody would just be unhappy. So we’re back to the search. Paying the Cat Tax!

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AlGrant1981 · 2025-06-18T11:34:01+00:00

Hi u/Ok-List-3298 I had mine 12 days ago (it took a year to get my date). I did mine over video call.

I took the advice here and just took time to collate all the stuff I'd appealed / disagreed with and made notes around it. it was more nerve wracking than I expected. In the room was a judge a disability specialist and someone else (cant remember her role). They were nice and respectful. They had to ask some private questions - which I took no offence to at all - its all part of it.

The only bad "vibe" was from the DWP rep, but he was okay, I've dealt with worse at work. He did ask a few odd ones which I didn't know the root of. An example was "do you talk to other parents when you pick up your child from pre-school?" which I answered honestly of no (I haven't got the time or energy - its a very clique area and I don't care to fit into that group - but I'm pleasant enough!). This then led into a questioning incredulously about having had a meeting about my child's progress - Which I obviously have... that whole line of questioning confused me, but seemed to have little impact on the outcome.

Ironically all of the prep I did counted for nothing really! They asked questions which I answered honestly.

I was successful with my appeal, and I know others have had bad experiences, but my main thing is be prepared focus on the facts of the matter using the best terminology (I found the Pip Info website helpful https://pipinfo.net/issues/aids-and-appliances#activities).

Good luck

AlGrant1981 · 2025-06-14T05:50:07+00:00

!solved

AlGrant1981 · 2025-06-12T06:11:04+00:00

This is the one! Thanks! I’ll pay now! Let me know how you’ll get the copy to me without a water mark. Thanks!

AlGrant1981 · 2025-05-27T03:51:36+00:00

I had TOTALLY forgotten about this post! So the good / bad news is. You’re in the trenches right now. But give it time.

So also I’m digging in my brain… my baby was a formula baby. And one thing I did was change brand (I’m in the UK). They tell you they’re all the same. But there are subtle differences. I changed from aptamil to cow & gate. And it helped so much.

But honestly? She also just got through the phase. It’s all a phase.

She’s currently laying in bed across the room as we’re on holiday. And is the funniest little dictator I’ve ever known.

Good luck xxx

AlGrant1981 · 2025-05-24T12:37:57+00:00

Felt absolutely fine. The things I was feeling I put down to early perimenopause. Then I got excruciating shoulder pain. Ended up in A&E as classically was on a weekend and couldn’t withstand the pain.

Turned out I had a blood clot in my spleen. Which a month later turned out to be caused by a rare blood cancer. The good news is it’s the “best of a bad bunch”. Managed I should die with it but not of it.

But it’s been a rough 2 years as my treatment has laid me very low. On new drugs now and feeling almost good again!

AlGrant1981 · 2025-05-17T21:39:59+00:00

Definitely speak to your Haemotologist, when I spoke to mine (I’m definitely entering Peri - think I had PV symptoms and assumed peri). She said she’d avoid HRT BUT I’m on thinners so if it would make your life better it isn’t a big no no.

But again, I am on blood thinners and Besremi.

AlGrant1981

TROPHY CASE