I have had GCA for eight years now and although much better I am so tired and ache. Rheumi thinks maybe fibromyalgia as well. I take 2mg steroid and 10mg of methotrexate. Life was manageable but last September everything changed. My OH was diagnosed with non Hodgkin's lymphoma, low platelets and bile duct stones. He has been in HDU twice with sepsis and is now recovering from pancreatitis.
He is coming home soon and I am so tired with twice daily visits to hospital for three weeks and the stress of HDU visits He is the loveliest man and we have been married for fifty three years. Even though I have two sons will do what they can I am really frightened I won't be able to care for him. I don't feel I can say how overwhelming this is to anyone.
I am trying to be positive and organise everything as he so needs good food and rest.
On the positive side I have just had good dexa scan after eight years with no AA and lowish dose calcium and vit D. Just good food and little walks.
A new day is dawning. Jen
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Oh my goodness, what a lot for you to contend with especially as debatably you are a patient yourself. You must tell people how you feel. If there’s one thing I learned in the years as a community (district) nurse it is that it never pays to soldier on alone. Countless times I saw carers stoically and heroically managing but invariably they broke and it’s not pretty. On the whole that scenario means you lose choices when crisis intervention happens when you become too ill or there’s an accident and those picking up the pieces have limited courses of action. From the sounds of it, you are doing really well, but think of both of you, being together feeling secure and not feeling overwhelmed constantly. Exhaustion is a killer.
Nobody should think any less of you, but if they do, they clearly don’t understand and that’s usually because one minute it all looks hunky dorey and the next, it isn’t and they are confused.
If you are in the UK, it takes time to set things up. I would advise speaking to your GP honestly, call your district nurse team for advice on local sources of help and use that family you’ve brought up for years. If you feel you don’t want to bother them, just think how it’ll be if they are having to scrabble around trying to fix a crisis. I’ve seen very poorly people being cared for at home instead of the care home route but it takes planning. If you can, sit them down and have a candid talk.
Thankyou for your advice. It seems easier talking to strangers. Even neighbours don't know and two closest friend died two years ago. I am busy making lists. Been on methtrexate eight years now.!jen
Could say been there done that but with parents. You think you are the only one who can do the best for them. In a way you are right but others can do a good enough job at times to allow you to survive.
With help you will be able to do your best for longer.
I have told OH to say I need to be there to discuss any help. Hard to get it right with parents especially if you have siblings. Thankyou . Jen
As SnazzyD says if you are in UK then there is help there but you have to sometime have to shout for it. I cared for my husband when he had Prostate cancer and having Chemo. In the end I got help which just gave me a break and at that time 4 years ago I was healthy. Sadly he died 2 years ago after 54years of marriage. I would not be able to cope now as I was diagnosed with GCA in Dec. You need to take care of yourself so do enquire about help. Best wishes.
So sad for you. It is like part of you is sick but you have to keep moving . I applied for attendance allowance four weeks ago, and the welfare officer told me to also get in touch with council deaf dept. So I have her contact number. Jen
Wow that's tough. When I'm have faced crises in the past, I have learned to focus on getting through and being ok the next five minutes. Looking ahead became overwhelming. Don't know if that's any help, Kia kaha (be strong in Maori)
Yes,. That is what I am doing now as things are changing so fast and so out of our control. But he will worry more if he sees me struggling too much. Future very uncertain.
It's pronounced key-ah car-ha and used in many contexts to send support to those that need it. I got really good at 5 minute blocks and if they were bad ones, celebrating I'd survived that block and would never have to do it again. Beware though, I dyed my hair red to feel in control of something so venting and coping strategies come in all shades and shapes 🤣
I can sympathise wholeheartedly on one count - OH has been in hospital since Tuesday and while I'm normally fine, this week I am totally cream crackered after going in 2x a day - 3 on Friday as I had to go and have bloods taken before 10am, visiting is 1-3pm and 7-8pm. At least the train from the village goes to the hospital back door!
You won't have that stress once he comes home and some of it does improve as a result - I remember that from when OH was having chemotherapy as an inpatient a week at a time. But as Snazzy says - there IS help out there, not a lot, but the support of someone keeping an eye on you is comforting.
You could have some shopping delivered by shopping online - removes a lot of hassle for less perishable things in particular. And if anyone says "What can I do to help?" take them up on it asap - it may shock them but it helps! Even if they just bring carefully selected fresh food (as opposed to what you get shopping online) it saves you having to carry it - although you getting out for some fresh air and a break is also important. You HAVE to look after yourself and not be in denial when something is too much because if you break you can't do anything either.
I am glad to hear about your good strong bones. I am sorry about the dreadful stress and worry that you are under. I can particularly relate to the terror about not being able to fulfill your obligations to family.
You need to have a frank talk with your sons and their partners, if they are amenable. Perhaps you could explore whether you are entitled to any specialist help from social services or the NHS. I am thinking adaptations to your home and someone to come in to help. There may also be benefits that your husband can claim, such as Attendance Allowance, intended to pay towards the help that is needed. There used to be a carers allowance too. It is no use both of you becoming incapacitated. Let us know how you get on. Big hugs! This is hard.
So true about talking to family. Let them know exactly how you feel and when you need help.
My sister thought I was coping well didn't think I needed help tho. would do little things for Mum, she didn't think of me. Feeling she wasn't pulling her weight made me feel quite bitter and only added to the stress and tiredness.
Thankyou so much. Sons are great and have both come over and used holiday days when he was critical. Only one with a partner and she has a large needy family in Texas. What I am hoping to organise is someone I can call on when needed. Have applied for attendance allowance, but £10 over tax pension credit. Never had much money but a bit more would be handy . John worked from the day after he was fifteen until sixty five when I became ill. Only one week off work . How lucky I've been as he is a quiet stoic Yorkshire miners son. Thanks for the hugs x
Oh thanks PMRpro, I know you have gone through these difficult times from previous posts. I think it is the uncertainty of everything. John had just had another biopsy before the pancreatitis as his lymph nodes had enlarged. We have however had really good care and tests have always been done very quickly. Nurses and Doc have been lovely with him. Good idea about shopping. Luckily I have a nice overgrown garden we will sit in. Glad it's summer this time. Warm wishes to you both. Jen
Yes, the uncertainty is awful - which is where the one day at a time approach can help. But sometimes one day at a time means you don't notice how you are struggling.
Do you have a Macmillan's nurse? Ours provided a lot of support - and I believe they advise on financial problems where appropriate. David got top level of one benefit (can't remember which and it was in Scotland) - all it needed was the word cancer and all doors opened there! All he'd applied for was a Blue Badge! And before anyone says "They're only when you are dying...", no, they aren't. Their purpose is to help you LIVE better with cancer. Even if all the provide is advice, that is a major benefit.
I was forgetting that; a cancer diagnosis is usually the gateway to much better provision. Macmillan is brilliant at keeping people’s show on the road and their financial advice service may well be able to help with the benefits problem.
Thanks,I think I will enquire about a blue badge as even if we can't get any allowances it will help him feel more able. The welfare lady who has helped us apply for attendance allowance came via Macmillan. But these last three weeks have been such a roller coaster I am just keeping on. Hopefully a bit of time to rest before he has to have gall bladder out. (Bile duct blockage has caused sepsis and pancreatitis ) ☹️. Then possibly chemotherapy and any other treatment for ITP. It is all a very steep learning curve like everyone with pmr/gca.
I have just picked two tiny dark red roses. Mini rose bought from Morrisons for a pound years ago, and the sun is out. Glad you were all out there this morning. Thankyou Jen.
There is Carers, it's an independent charity run by and for Carers. The service is free and 100% confidential. Once registered you can set up a 'crisis' plan, this is for when you are too ill to do your normal caring or are taken into hospital suddenly. Your plan will include everything little thing that someone coming in needs to know, where tablets are kept, meal times bedtime routine etc etc. I have it for my husband and it is peace of mind more than anything else. Here in Southend it is called southendcarers.co.uk, not sure where you are but try your town name and see if it comes up. I'm led to believe it has been rolled out across the UK. I have family and friends but this is timely tailored exactly to his needs should I not be around.
Thankyou so much. I am trying to keep together all the hospital information. Scan info, blood envelopes etc. After reaching out to you all this weekend I realise I have a lot to learn and must start putting together info from everyone. I spoke to macMillan last week and welfare but this pancreatitis came out of the blue after bile duct procedure. Separate from lymphoma.
I am feeling much more settled today and off to hospital. I often stay after visiting until the evening visit so I am out six hours.
I guess with your knowledge you have travelled this way for quite a time. Take care.
We can only try to offer help and advice based on our own experiences, what seems easy once you've gone down that road is not easy for someone like you wondering which way to turn next. I've never regarded being in need of help BUT if ever we are taken ill unexpectedly that is when it hits home - and it can happen.
You have plenty of service input from what I hear but again something like the Carers brings it all together, they are at the end of the phone when the need arises and it doesn't interfere with your other services it just ensures everything is still ticking along in your absence. Best wishes to you both.
I'm just catching up with the last few days' posts after a visit from my sister - she's now returned home to London.
I'm sorry to hear about your lovely husband's illness and wish you both all the best in the world to cope with his treatment.
Thirty years ago, my partner was in hospital with a brain injury, for almost 3 years before he died. However, I was 30 years younger, working, daily visiting but no PMR! Nevertheless I had to be mindful of looking after myself, while he was being cared for by the professionals.
I don't need to say any more, as the others have offered such good advice.
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