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Hi Emma, I am so sorry to hear that you had an earache for a few days and that you have a boil in your left year. I find having a low immune system does mean that I get boils, infections etc. and yes, the fatigue sets in. I say it means my batteries are depleted and I need to build up again. Why does it take less time to deplete my batteries than replenish them??? I hope your early night was restorative and that you are not going back to work too quickly. However I realise sometimes we have financial constraints and fears of job security etc. Take lots of care yourselves and yes, please let us know how you are and how you are feeling, we are here to support you.

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Hi dawn

I’ve told close friends and family and work colleagues about my condition which is a huge weight off my shoulders…I am coping okay with everything…just my fatigue gets me down abit…I have been to the Drs for my yearly MOT and all is good apart from my weight…I’ve put a stone on in the last year…which I am unhappy about…i am now 18 and half stone…it’s so hard when your so tired all the time and you work strange shifts…I’m going to try and cut back the rubbish I eat and get abit more exercise…hope you are ok …take care x

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Hi Alfie

Thankyou for your message. I am on abx for the infection now and slowly feeling better…just waiting for my hearing to come back in my ear…I do feel run down alot of the time I have to say …busy hectic job and hours …running a house …looking after kids and self…but I know when I need to rest and switch off…hope your ok …take care…x

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Thankyou

Yes I’m on abx and they seem to be slowly working…just waiting for my hearing to come back in my ears…hope your are well…take care x

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Hi Emma, I really feel for you when you describe the vicious circle, I find it is so easy to spiral downwards but so difficult to clamber back up. However I feel so much better psychologically when I can, my problem is I find it difficult to see small amounts of progress, I want it now. I also realise how difficult your shift work makes it. I also feel so much better in the sunnier weather, daft isn’t it. As for eating rubbish if anyone else points out ‘you are what you eat’, I know that but… Since diagnosis I appreciate the simple things of life more and I enjoy nature and music on my Walkman and that helps me walk more and just typing this I reflect on how much further I can walk now. We are all here to support you so please keep posting and look after yourself.

Hi dawn

I’m just recovering from a boil in my ear…and now the antibiotics have given me thrush…apart from that im not bad Thankyou…i feel since ive told family about my illness that they dont mention it and support from my children at home has been minimal…I understand that they may not understand the illness…but I am getting good support at work now with my shifts…I still suffer greatly with fatigue and I am seeing a counsellor for my anxiety which doesn’t come from my diagnosis but does also tire me out…I have also met a partner the last few weeks and he seems supportive and caring and is a good listener…I feel it’s good for me to have someone else in my life I can turn to to chat if needed…hope you are well…bye for now x

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Hi Alfie

I have now finished my antibiotics for my ear but they have given me thrush which isn’t helping how I’m feeling at mo…I remain tired…been to gp and had my yearly MOT …i have put a stone on since last year so that’s not good either…I need to look after my physical health better as it’s as important as my mental health…

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Dear Emma, I’m glad to hear your boil has cleared up, but I can sympathise with your frustration about getting thrush. When I’m on chemotherapy I have to take pills to stop me getting thrush as your immune system is compromised, and pills to stop me getting gout which I have always associated with Henry the 8th ! Your right about needing to take good care of yourself both physically and mentally. It’s not wrong to put yourself first sometimes as overdoing things is not helpful. Before I got blood cancer I was far to concerned about about other people and found it hard to put myself first, now I feel I have the right balance between the two.
Best wishes alfie

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I didn’t think my gout had anything to do with blood cancer treatment but it does seem to crop up here a few times. I feel your pain as I have been on gout medication for two years now, and had my check with GP yesterday. Thankfully it is stable, although being able to lower the dosage is not on the cards as hoped.

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Hi Emma, it really sounds a miserable place you are in just now because I know when I have your symptoms they really drag me down and yes, the my anxiety and fatigue really sets in. As for your family I can only say how it has been for me and I have found most people in the outside world did not know how to be around me when I told them. In hindsight my emotions were on high alert and I was waiting for them to make the first move, whether I would have thought it was the right move is in question. What I wished I had done now is to keep the lines of communication open more and even ask them how they felt about my diagnosis and condition and whether they had any fears, thoughts and feelings and perhaps open up about mine. The more I soldiered on appearing to cope the less they were there for me emotionally and practically. Please let us know how you feel your counselling is going?

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It sounds like there is some support around you, but perhaps not from your family. I’m glad to hear work have been supportive, are you able to be more flexible with your work pattern? I hope you find seeing the counsellor helpful, anxiety can be exhausting can’t it. I hope you’re well, and recovering from the boil and the thrush!

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Hi Erica

I’ve had my first counselling session with a psychologist regarding my anxiety…it went well…I didn’t actually realise how bad my anxiety was until we starting talking about the things that gave me anxiety…it’s the small things that seem to be massive. It opened my eyes abit and made me think about myself and how I was feeling about anxiety in general…and where this anxiety came from. I first started with it years ago when with my ex husband…and it has grown from there…I do have another appointment in a week or so…got the date written down…fingers crossed it’s the start of something good…anxiety can be so draining…hope your well…chat soon.

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Hi dawn

Yes I do wish my children were more supportive but I just get on with it now…I don’t dwell on it…it is what it is…work are good and have put some plans in place regarding my shifts and occupational health are aware and supportive. The counselling went well and made me think about alot of things…it is so exhausting though…going back again next week I believe…my boil gas cleared I think…hearing not fully back…still congested…but still having treatment for thrush…I ended up at A and E at the weekend as I was beginning to bleed with it…it just wasn’t going so got plenty of pessaries and cream now which is working…just woken up from a nightshift so I’m chilling now…speak soon.

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Dear Emma, it’s good to hear you are getting something out of your counselling session especially with all your medical issues going on at the same time, hopefully when that situation is remedied you can give it your full attention. Anxiety is like being caught in a revolving door it makes your mind go round and round until you get help to step off safely, so stick with it and it will help reprogram your thinking and the anxiety should reduce. Best wishes alfie

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Hi Emma, thanks so much for responding. I am so glad your first session was enlightening, I think that was a turning point for me when I understood where my anxiety stemmed from. That actually freed me up to work on choices of coping strategies. We won’t start about ex husbands, but let’s say perhaps that is why they are ‘ex’. Yes, anxiety is really draining, but actually I also found counselling was as well, but it was ‘my time’ which was really important and rewarding. I was in counselling for quite a while, but it really helped me to get to know and understand how I tick. I also realised the impact of the shock of being told I had CLL had had on me emotionally and physically and for how long me and my body were on high alert. Please do keep letting us know how the sessions are going although I found my progress wasn’t linear.

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I hope your counselling is continuing to go well, thinking and reflecting and sometimes talking about difficult or challenging memories in the sessions can be really difficult and exhausting, it’s an excuse to care for yourself as much as you can especially after! I hope you’re doing okay Emma.

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I have the same disease as you. I have only had it 4 or 5 years though. So you can teach me something. It has only made me tired when the medication (Hydroxycarbamide) reduced my red blood cells too much. I think the dose was too high because it has to be matched to your weight and my weight had gone sharply down for various reasons. As far as I know ET does not drastically reduce life span but since I am already old that doesn’t make as much difference to me as it might to young people. Geoff

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Hi there

Its nice to hear someone has the same illness as me…if you know what I mean…I a 45yrs old with 2 grown up children. I know the life expectancy is pretty normal there is always the what ifs at the back of my mind…I struggle alot with fatigue…think some is due to me bieng overweight but I work alot of hours too on a psychiatric ward which is very challenging at times…I guess we have to look after ourselves best we can mentally and physically…what does of hydroxycarbomide do you take ?

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Hello all I hope you’re well, just to let you know there is a thread for those living an MPN to hopefully provide a space to talk about these conditions and offer support. You can find it here; MPN's - living with!

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