It’s Mental Health Awareness Week 9th-15th May, and the theme is loneliness, something we know has affected many in our community, particularly during the pandemic. We thought it might be a good opportunity to open up a conversation about how we cope with these feelings, and what helps support us during these times?
Hi @Alice_BloodCancerUK I think Mental Health Awareness Week and the theme of loneliness and isolation is so important especially after the isolation we have had over the last 2 yrs of Covid times.
It is difficult to say what helps me because when I have those feelings of loneliness and isolation I feel very introverted and it is so much more difficult for me to accept or ask for help.
Those neverending, but confining 4 walls.
Just me and my head. not a good combination.
Everything just exacerbates my feelings and I loose touch with reality.
All I see in the media is smiling happy people together.
I look out of the window and happy people are socialising together.
I listen to music and all I hear is romantic or happy songs.
I watch a film and only see people together.
I read a book and there is always seems to a socialising angle.
I can also feel lonely and isolated with people around me or in a social situation.
Even my medical appointments, if they went ahead, were by phone or virtually over the last 2 years.
So what helps me cope and I think it is just that timely random act of kindness.
Perhaps a smile or friendly words from someone.
To receive a card or even a letter from someone.
A phone call, an email, a Whats App or zoom from someone.
What does help, but is the hardest for me is to contact someone, my mind always says I cannot contact them now because …
If only I could turn my thinking around what did help me was to change my thinking from ‘well, they haven’t contacted me’ to ‘I will contact them’.
What has really helped me through the last 2 yrs with my feelings of loneliness and isolation is this forum and the Blood Cancer UK support line, it truly makes me part of our supportive forum family and wider Blood Cancer UK family.
Thank you every single one of you.
Thank you so much Erica for sharing such honest and moving words.
Can others relate to this?
@Erica I can really relate to the words which you have written. Particularly about the random acts of kindness from others which has been especially important to me since the start of the pandemic. I’ve also found using zoom a such good way of being able to have contact with others. In fact a group of people who I’m met on zoom continue to give me a lot of support even though I haven’t met any of them in person. @Erica, @Nichola75 @Alice_BloodCancerUK, @GemmaBloodCancerUK thank you all for the support which your kind words have given to me and to so many others.
What you have both said @Erica and @Kirsteen resonates with me so much. So often we all share the same feelings which makes me feel less alone.
The feeling of loosing touch with reality and feeling isolated in social situations in tough.
I think I’ve worked hard to get back to normal at work but it’s been hard with regards to worrying about Covid and just coping with the daily stresses of working in education.
Socially, I’m still a work I progress. I’ve definitely lost a sense of who I am in social situations (unless it’s with my closest of friends) Conversation doesn’t comes easy anymore which is really hard.
- Being able to share on here is at the top of my list.
- Saying no and not feeling guilty about it. I do make sure I balance this carefully with making sure I’m not isolating myself. However, I’m much better at knowing my own body and if the thought of something is making me anxious then I know it’s not the right time.
- Accepting that I do have bad days and being honest about this with friends and employers.
- Swimming helps me to reset. I swim as much as I can
- And finally family time. Our daughters never fail in making us smile. They are out biggest achievement!
That’s me for now X
Erica, Kirsteen and Nichola…thanks for sharing and being honest. Its my husband who has the diagnosis but I have been told i need to isolate/reduce social interactions too with the covid numbers being so high. If i get covid they will stop his treatment.(which goes on till september) . I take my hat off to you all for not only dealing with your illness but having to navigate the loneliness and isolation for all this time. I can totally relate to everything that you said. I am going to be totally honest too and say I find it so hard. I miss my exercise classes, going out for lunch and going to the pub to listen to the live music!! I know once he has been through the treatment I will add in some more socialising other than walking and coffees, but it is isolating and quite depressing at times!! Friends still ask me to do things, which quite often I have to refuse (one asked me to a concert recently) . I find saying no so hard. I’m a bit of a people pleaser and that can worry me for days and make me feel that i have to explain all over again why I cant go!! This forum has been a godsend to me, particularly at diagnosis in December 21 where husband was in hospital and I had nobody at home that understood the illness. So thank you, each and every one of you for listening and sharing xx
Oh @Catpat it must be so hard for you and I expect it brings up so many mixed emotions for you.
Thank you so much for being so honest.
I have to admit I feel that it might also bring up feelings of resentment for me, however much I loved my husband.
Socialising and doing activities are very important to me. I am a Pilates girl and also love my music.
It has taken me many years, but I am now able to say ‘NO’ and I have found that it is usually accepted. If people try ‘emotional blackmail’ then I question their friendship.
Yes, it must be isolating and quite depressing at times for you as the spouse. The Unsung Hero.
Please do use this forum to be really honest how it is to be you, we are here to support each other and if you would like to talk to someone the Blood Cancer UK support line is there for you too.
Look after yourselves and spoil yourselves.
I think it must be so hard being the partner. I know how much my husband struggles at times and how much the family till worry about me getting poorly. Your husband is very lucky to have you, as are we as it’s so important to support the patient and the carers.
Saying no is so difficult isn’t it. Those true friends really do inserts and though and I hope are there for you when you need them.
I hope that once the sun starts shining that you may be able to do a little more. Until then, be kind to yourself. You are doing an amazing job! Lots of love X
Erica and Nichola…thanks for your replies and support…I think what maybe we all miss is just that connection with other people. When I am sad or upset its that interaction that helps me feel better,… … …Erica, I dont resent my husband but I do often resent the illness!!. We have had 5 years of family illnesses and losses and could have done with a break. I have a go at God sometimes about this lol…But, three months down the line things are a bit more steady and I would say the illness has brought us closer and made us appreciate each other more. We are very lucky to have a wee caravan to escape to whilst confined, so that is nice to get a change of scenery…Erica, I do like yoga and pilates. I havent done any for a long time now and I really do feel much stiffer!! Something to get back to in the future…Take care girls xx
Hi @Catpat , I am actually in a similar situation to yours as it is also my husband who has the diagnosis. As well as having ET he also has prostate cancer and had radiotherapy last September. I have suffered from anxiety for many years so I’ve found this time really difficult. For me it’s because I feel as if the things which used to help me with my anxiety have been taken away. So not being able to see people or go away for breaks on top of the worries about my husband’s health has been really difficult as I know they have been for everyone on the forum.
@Nichola75 I really related to what you said about finding social situations difficult. I’m starting to feel disconnected from other people. What has added to this is that we relocated 18 month before the pandemic started so I haven’t seen old friends in over two years. Although there are a couple of close friends who I do feel empathise with our situation there are others who haven’t and I’ve stopped keeping in contact with them. I have met some nice new people here so now I’m trying to meet up with them more often but because they are not friendships that I’ve developed over time I don’t want to feel as if I’m pushing my self on to people. I agree as well about the importance of saying no to people and making sure that my husband and myself are comfortable with who we see and the situations we are in. I am a retired teacher @Nichola75 , I can only imagine how difficult the whole pandemic must have been for you as working in education is stressful at the best of times. I do hope that your school have been supportive to you.
Hi @Kirsteen. It’s really interesting what you said about the pandemic taking away your coping strategies for managing anxiety. That must have been really tough, alongside the relocation which I can imagine was quite isolating.
I’m glad you have started to make some new friends where you live now and hopefully - as things start to ease - these friendships get stronger.
Have you made any plans to visit old friends where you used to live? I think you definitely learn the value of true friendship at times like this.
How is your husband doing at the moment?
We have had our ups and downs at work but overall they have been very supportive. Most issues have been due to a lack of understanding about the risk and the condition which I think we have all experienced at some time or another.
Sending lots of love X
Hi @Catpat I really have to apologise of course it is the illness and not your husband you resent.
Yes, I expect your situation has brought you closer.
It sounds as if you have had a tough 5 yrs.
Your wee caravan must be wonderful and great to escape our confinement.
They say that ‘a change is as good as a rest’
Take care and I hope the bank holiday weekend is kind to you.
Hi @Nichola75 and everyone, my husband is okay at the moment. As I mentioned in a previous discussion he has had some side effects from the radiotherapy and has now had the results of an ultrasound scan and an x-ray and fortunately these were clear. However our GP thinks it would be good for him to have an MRI scan but apparently this needs to be authorised by the oncology consultant so we’ll need to speak to them at his appointment next month. He does see his haematologist next week so we’ll speak to him about it as well. Living with cancer really means living with a lot of uncertainty. I’m trying to live much more in the in the moment and making the most of each day, although it’s not always easy.
We’re hoping to have a couple of good friend to stay with us and also I hope to manage to have a seaside break in Wales with a very close friend. I really hope that both of these go ahead.
I’m glad that your work have been supportive on the whole but it must have meant you having to explain a lot to them.
Wishing everyone a lovely bank holiday weekend.
Hi @Kirsteen please let us know how your husbands appointments go.
You are really right about us living with uncertainty and I also find trying to live in the day helps.
I think it is so uplifting to have social things to look forward to.
I have only met one friend so far and it really gave me such a boost.
Please let us know how your social events go.
Be kind to yourselves and spoil yourselves
Uncertainty is very hard - I just try to control the things I can. It’s very hard though x
Evening Alice , Think that is great bringing this up and to an open discussion , Having been hit wit covid and going from freedom to 24/7 looking after two adult sons with Cerebral Palsy and additional support needs with no help , it’s a wonder how I managed to keep going , being in 24/7 no one to talk to week after week , at 1st couldn’t even take the boys out a run in the car for the fear of being fined , then last year I was diagnosed with cancer , be er felt so alone , separated from my boys taken to a hospital 20 miles away from where I lived made it harder , great news I’m in remission , but isolation still hits me , as my 2 son’s are still in care and I’m here myself , I call my boys for a chat , they might/might not come to the phone which makes me worse , if my leg & neuropathy isn’t playing up I go for a run in the car , went out for dinner myself and didn’t care if people looked I’m 1 person who still has to eat , I’ve taken slowly to getting my garden looking better for summer , bed a few plants and I’m done in , knackered for the day , but when I see what I’ve done it’s worth it Xx
Hi Jay, you’ve had so many things to deal with and you have done so well get through it all and keep going. Being a carer for your sons and then having your cancer diagnosis must have been incredibly difficult for you. As you said the Covid pandemic on top of having health and family worries has made everything so hard to deal with and having the feelings of isolation on top of everything else. I know from your other posts that you have been doing so many positive things such as joining the community centre and getting out and about. I do hope you are able to see more of your boys soon and that your health continues to improve. You have been through such a lot. Take care of yourself x
Hi Jay, you word your last 2 yrs so well, it must have been so, so tough for you and your boys.
It really shows how absolutely brilliantly you have done over the last two years, but especially recently making the big, very brave, steps to socialise and improve your health and well being, it cannot have been easy for you.
Perhaps I would say that if your boys do not come to the phone it does not mean that they do not love you any the less, it is just boys being boys, and actually shows that they are being well looked after.
It’s been a good weekend for gardening weather, yes, there are different types of feeling knackered, yours perhaps has a sense of satisfaction and achievement mixed in, if you get what I mean.
I learn so much from you, please keep posting and be kind to yourself.
I think there’s more than one kind of loneliness and isolation. I went through the shielding isolation like the rest of you but I think once my condition settled down, nobody much bothered with me and aside from sibling phonecalls, I rarely talk to people directly or even socially. I find music helps as well as reading. Also when I’m able to go and sit somewhere scenic, particularly near water.
Oh @Franko with the lovely weather this weekend I have been walking along the river bank every day with my music playing in my ears. Music and water what more could a girl want.
It’s free, we are so lucky.