I can understand totally @Chrissy . I got over any anxiety about my treatment very quickly but I have found it much tougher being locked down and not being able to do anything with my life. I feel I’ve got to do something positive to shake myself out of it so I do some writing and I’ve joined committees and research studies to connect with other people in my situation as well authorities on the subject. i find keeping busy helps but I long for the days of freedom again.
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As much as I hate working from home it does keep my mind occupied! I am suffering with anxiety as well and it’s not nice is it. Glad we can all be here for each other x
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How has your week been @Emmaco . I know I’m still up and down. My poor husband is being very patient!
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I am currently in remission from Myeloma and pretty much shielding since March.
I am finding myself far more anxious and worried in the past few weeks than I have been through the whole pandemic and Im trying to work out why now?
Too much time to think perhaps. It seems just too cold to get out walking and even then I feel a bit lonely and isolated trudging round the same old streets.
I really am a misery at the moment and could burst into tears very easily .
I am trying to stay away from news bulletins as none of it is very helpful anymore.
I felt quite optimistic when the vaccines came along. I had mine a few days ago and felt quite unwell for a few days after. I find myself dwelling on that. Why did my body react like that? What does it mean for my immune system?
Can’t quite see the way forward at the moment but then can anyone?
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Hi @Lockdownsue60 . I think it’s quite natural that our emotions are all over the place at the moment. One minute I’m up and the next down. It sounds as though you’re struggling at the moment. Have you considered any kind or counselling or talking to your gp? I know it’s not for everybody but helped me. Shielding seems to have gone in forever! Are you in a bubble with anybody, friends and family around you? Im glad you have posted. As you can see, lots of people are having the same feelings as you. The support line might be a good place to start?
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Oh @Lockdownsue60, you are entitled to be a misery and to burst into tears, that is why we are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
I agree, that this lockdown seems so much harder and my anxiety and worry levels are higher and I do blame the media, the messages seem so repetitive, what did the news programmes fill with before Covid and Brexit?
Also we are all missing our social interactions and activities. I have a 2021 diary which is empty apart from medical appointments.
As I have said before my emotions are really oscillating as well and yes, I could burst into tears so easily sometimes.
Someone, not medically trained, said earlier that if you have a reaction to the vaccine that is good news because it and your body are working, But don’t quote that. What does that mean for me that did not have a reaction ???
I can trudge the same streets as I am very nosey.
Take care and keep posting and we will all get through this together.
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Hi Nichola
I’ve been ok thank you. Trying to remain positive about the future. I’m still waiting for Access To Work to contact me regarding my job. Due to bad weather I’ve still not had a laptop delivered so pottering around house doing jobs to keep busy. Reading too. Have my grandson one day a week for my daughter. I do feel alone and isolated shielding. I’m not hearing much from work colleagues which makes me paranoid/anxious. Just feel a bit forgotten about. I’m sure it will all come right eventually. Hope your keeping well.
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I completely understand that feeling. I don’t hear from my colleagues much either. They are busy during the day which I understand. However, they still have the social contact with each other which is different isn’t it, and I miss that. They get home from work and are exhausted whereas I’d be quite happy to have a chat for a couple of hours. I don’t think they’ve forgotten you, and I agree, it will come right X Hopefully, when you get that laptop you’ll feel a little more involved. I bet it’s lovely having your grandson isn’t it. I can imagine he keeps your mind very occupied, at least for that day. I’ve just started puzzles again. Forget how much we all enjoy them. We need some sunshine as well to brighten the days. You take care of yourself and keep letting us know how you are doing.
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Hi @Emmaco, it must be difficult waiting on Access to Work and not hearing from work colleagues, I know that in a different situation for me that it turned out that work were floundering in an unknown situation and colleagues actually didn’t know whether to ring or not and took the easy way out and were also so busy in their own lives.
All parties were hoping that I would ring them, I was looking at their behaviour and they were looking at mine.
For you shielding makes it all the worse. I think we are all missing events in our diaries, human contact and social interaction.
I think that most of us are finding their emotions see sawing but feeling paranoid, anxious, alone and isolated is so horrible so please keep sharing on here so we can support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
The main thing is to take care and stay safe.
@Emmaco a lot of people at the moment are just caught up 8n trying to get through Groundhog Day every day. I know that most days that I work from home I don’t talk to a soul which was one of the reasons I volunteered to work on campus for a couple of days so I at least get to speak to 3 or 4 people a week. I’m sure as @Nichola75 said it will get better once you have your laptop and enjoy the many merits of Zoom and Teams! I keep busy by reading, watching TV comedy to keep my spirits up and writing. It’s a lot harder to write a murder mystery than I thought, I keep get tangled up in a mess of my own making!
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Hi erica
Thank you for your reply. I just really struggle with change but more so for my hearing side of it. Just feel so cut off and isolated as I struggle yo hear on the phone and my confidence has hit an all time low at the moment. I do know deep down there will be light at the end of the tunnel, but it just seems so far away. I’m an emotional person and so miss my hugs and kisses from my family. Like you say emotions are fluctuating all the time. I do make sure I take time out to relax and do the regular things I enjoy like reading, cooking, having that special soak in the bath with your favourite bubbles and of course my grandson keeps me going with pictures and visits. I have a 22 year old son that lives with me and I think he is slowly starting to get a little fed up. He spends most of his time in the bedroom on ps4 when not at work. He talks to friends online etc so I don’t mind. He sits at the table with me mostly for meals but would be nice to sit and watch TV together. I have asked him but he prefers to chill in his room. The sunny days I am looking forward to as that really makes a difference to how I’m feeling . Take care.
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Hi there
Yes I get I’m not alone in feeling this way. Every day does feel like groundhog day. Yes at least when I get my laptop I can catch up on few things. I do enjoy reading in the evening and I have been watching a couple of films which shows my concentration is still there. The book im reading at the moment is karl pilkington. He makes me laugh. Not sure if you’ve ever heard of him?
Oh, @Emmaco a soak in the bath with your favourite bubbles is also my favourite treat.
I also look forward to the hugs and kisses.
It really must be so isolating not being able to hear, it is worth telling everyone and at hospital appointments see if staff will wear see through masks or visors, it might help slightly. It is horrible having to ask people to repeat themselves all the time but you jolly well make sure you do, it is vital that you can understand everything that is said fully.
Yes, phones are now our lifelines and not being able to hear must feel so limiting.
As for your 22 yr old son, my son had identical behaviours !!!
Please use this forum as the beauty of it is that it does not entail hearing so hopefully you won’t feel isolated on here as we all support each other.
What do you enjoy reading?
Groundhog day such a good word …I think of the film with Bill Murray. It’s so good people say how they feel if they are struggling …even if you feel alone …support through sharing realising others feel the same emotion.helps…it makes you realise it’s ok to feel this.
I know my medication has been increased slightly try and get my platelets lower. My recent tests were good but the Dr wants to try and get my platelets lower. They’ve stubbornly stuck at 600 for a year…which is fine but she’s like them around 400 which they’ve not been in.years. the thought of more tablets sent me into panic mode… what with side effects of the jab I waited before increasing the dose and I’m.doing it slowly over the next 2 weeks.
I’m hoping spring is around the corner soon…need it to try and get more energy .sometimes feel.my get up and go has definitely gone away…stay safe everyone…
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Hi @Hmc63, I agree we definitely need a little bit of sunshine. hopefully springtime is just around the corner and I can’t wait! Have you managed to get out at all or are you not at that point yet? Sounds like you have a very attentive team around you but I completely understand wanting to get your strength back before you increase the medication. What are the side effects? Do they impact on your energy levels?
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Hi @Hmc63, what a brilliant way of putting it ‘feel my get up and go has definitely gone away’. I definitely know what you mean and I think it is the ‘Groundhog Day’ and lockdown and all the winter effect with me too.
I am heartened to see the spring flowers starting to sprout.
As soon as the sun comes out I feel like the spring flowers but they are oblivious to the lockdown effect.
You verbalise things so well, thank you.
Let us know how increasing your medication dosage goes.
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