My husband has ET and struggles massively with fatigue, but also on the flip side doesn’t sleep due to cramp (caused by his medication).
I’m struggling with him not being able to do what he used to do and find I get frustrated.
Am I being mean??
Hello@Mel1967. I don’t think you are being mean at all. It must be such a huge adjustment for you both and off course you will miss what you were able to do pre diagnosis.
Has he spoken to his team about fatigue or cramps. Can it get better for periods of time or is this part of the ET? X
Hi @Mel1967, no, you are definitely not being mean.
People often forget that the nearest and dearest, often carer, suffer great losses with the person with the diagnosis, the loss of what you had mapped out for your lives, your hopes, expectations. etc.
It might mean the loss of emotional support, practical support, a sexual relationship (not often spoken about) having children, loss of an income, loss of holidays, socialising etc.
It can impact on having your own fulfilling life with things that you enjoy. etc.
It can mean the taking over of financial matters, practical jobs/DIY, remembering extra things that need doing, it can mean the chauffeuring of your loved one to hospital appointments and treatments, becoming the ‘nurse’ etc.
It also can mean lack of sleep, trying to hold down a job, run a home, bring up children and often the patient gets everyone’s attention and care and that feeling of wanting to scream ‘what about me’ and the patient also can take their frustrations out on their nearest and dearest etc.
I trust I have not depressed you, but I am sure so many other share your frustrations and feelings so thanks so much for your honest post.
Loved ones are the thankless heroes, but we on here appreciate you more than you will ever know or feel.
Please keep posting how you are and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Be kind to yourself, spoil yourself and look after yourselves.
I couldnt have put it better myself Erica. Mel 1967 i have called myself much worse than mean please dont beat yourself up. Debbie
Hi @Mel1967 I have been thinking about you and I just wondered how you were doing now?
Look after yourselves and be kind to yourselves