Waldenström Macroglobulinaemia (WM)

Hi Erica, how are you doing??

I’m ok thank you. I recently started a new job at a GP surgery in a rural village close to home. I’ve started with 5 days/30 hours a week but am hoping to cut down to 3 days as am finding it exhausting! It’s all about finding the right balance isn’t it? This is the first job since furlough & redundancy from lockdown.

My 3 monthly hospital check ups have been going well but my para protein level is slowly creeping up as expected but if feel well in myself which is good :pray:t3:

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Hi @sajdee I am keeping well thank you, managing my fatigue and my energy levels are better in the morning so I do my daily walks then, which have been wonderful in the dry weather and sets me up for the day.
I am glad that your 3 mthly hospital check ups have been going well, what a relief.
Oh, how exciting that you have started a new job at a GP surgery but I bet it is a shock to the system and exhausting. I am useless at getting the right balance. but I do know a new job takes me some time to settle into and I don’t deal with what personally stresses me well, both are fatiguing.
I hope you find the right balance for you and be kind to yourself and keep posting

Hello Sajdee

To be honest, I feel pretty rubbish at the moment. Two weeks ago, my brother gave me Covid!

I was really annoyed with him, as I had been very careful. I haven’t been into a shop or anywhere crowded for two and half years.

I have done all my shopping online. And whenever I have had to go for blood tests, scans etc. I have masked up.

He thinks he picked it up at the barbers. I have not even been to the hairdressers. Just got my Mom to give my hair a straight forward trim across the ends.

I started off with a very sore throat. I was constantly cold and felt shivery. I didn’t think to take my temperature. I did take a covid test. It was negative. So, I just wrapped myself up in a big heavy blanket, and sipped drinks to try and relieve my sore throat. I took further tests for 3 days before I got a positive one. I had lost my voice by them, thanks to my sore throat. So, my sister rang my consultant’s secretary, to pass a message on to him that I had gotten Covid.

He unfortunately, was on annual leave. One of his nurses rang me back the next day, and I croaked out answers to her questions. She said she would pass my details on to the peeps that dole out the anti-viral meds. They would probably ring me back. They didn’t. They have stopped giving them out to just anyone, as the demand for them has been very high. They are only giving them out if you have a high temp. So, I wasn’t deemed to be ill enough.

My sore throat turned into ear ache. And then a stinking cold. Which I still have, and a horrible cough. I just feel like I am drowning in catarrh. Sorry if too much information. And so, I don’t feel too good at the moment. And this constant cold is making me feel miserable.

I’m very tired. But then I always am. I’m bruising very easily. The nose bleeds are back. I have had them all my life. They stopped after the chemo. Don’t know if it’s just down to my cold though. All that blowing of my nose. - I think I don’t have enough good white blood cells to fight this cold off.

I thought I would give it another week, before I contact my Consultant. Perhaps he can suggest something to help.

On the plus side. Libby had her final jab yesterday. So, we can now count the days down just another 6, and we can officially go walkies! I can’t wait!!

Hope you continue to stay well and stay safe from Covid. Anyone who is coughing and sneezing probably has it. So, avoid them like the plague. It’s sadly spreading like wildfire around here.

Take care.

Twinkle. xxx

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Oh @Twinkle you really are feeling rubbish and horrible aren’t you and I don’t blame you being annoyed with your brother giving you Covid after you being so, so careful for 2 1/2 yrs.
Perhaps if you feel really concerned about you symptoms and feel worse ring 111 or go to A&E and stress your vulnerability
Great news that Libby had her final jab yesterday and in 6 days she can go out, I hope that you will be able to go on her first adventure with her.
Don’t loose your Twinkle, @Twinkle !!! be kind to yourself.

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Thanks Erica. I didn’t think about ringing the NHS 111 Line. It might come in handy.

I hope you continue to stay well too. xxx

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Hi @Twinkle, thank you for sharing this and I’m so sorry to hear you’re feeling rubbish. As Erica has mentioned, please don’t hesitate to reach out for help if you find you’re feeling very unwell or indeed find your symptoms are worsening (111).
You certainly don’t have to wait for your next appointment to share your concerns with your consultant, Twinkle. It’s useful for them to know what you’re struggling with so that they are able to support you better. Do also reach out to our Support Team if you’d find it helpful to talk anything over, we’d be happy to support you. I’ve sent you a direct message, as well. do take care.
Best wishes,
Tanya

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Thanks Tanya. That’s really kind of you :slight_smile:

xx

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Hi Twinkle, I’m so sorry to hear you’re feeling so poorly with Covid. It’s horrid I know. I too had been extremely careful for two plus years but somehow caught it and felt dreadful. I was unable to get the anti virals also but thankfully I recovered but it took sometime as it fatigues you even more …… something none of us on here need!!!

Great to hear your puppy will soon be able to go for walks. This will hopefully help you to recover - fresh air and out in nature works wonders!!!

Get well soon xxx

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Hi @Erica bless you! Fatigue is the most frustrating thing isnt it?! You’re doing the right thing going for walks first thing as it sets you up nicely for the day!

I’m due my 3 month review at work next week and keeping my fingers crossed they would consider me dropping hours. As you say also it is about finding the right balance. I so hope they can as I am enjoying working with nice people and wouldn’t want to look elsewhere. Wish me luck!!! :pray:t3:

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Oh @sajdee fingers and toes crossed for you and your 3 mthly review next week, don’t forget it is a two way process and if you don’t ask you don’t get, they are not mind readers and hidden disabilities are so difficult
Please let us know how you get on so I can uncross my fingers and toes.
Be kind to yourself.

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Thank you so much @Erica i’ll let you know how it all goes!!! :crossed_fingers:t3: :pray:t3::crossed_fingers:t3::pray:t3::crossed_fingers:t3: