Dear everyone, I have GCA and PMR and taking 11mgs of pred at the moment.
.My son, his wife, 1 year old and five year old who I love to bits, came for a holiday from Sweden 1st August. The last few weeks have been full. We took them back to LHR yesterday afternoon. I miss them already but...
Today my husband and myself have been cleaning and tidying the house, I've done more housework today than I have the last year. I am exhausted. I had a little sleep this afternoon. When I woke, in a daze and trying to come too, my husband, who I thought understood my condition said, lets pack now and go to Dorset for the weekend. I love Dorset but I can't keep up with the marathon set for me. The reason I'm so upset is he didn't give it a thought that I might be too fatigued to pack and travel now. I got in such a rage, it came from no where. Is it me being unreasonable, please tell me if you think it is.
I post this because I value you all and your support. I won't and can't talk about my husband to family or friends. Why didn't he realise or understand, I can't stop crying.
I said I would go, just needed to talk to you to get it off my chest.
love from
Marion
Written by
MARION7
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If only one could rewind! How great it would have been if the "Let's go to Dorset" suggestion had come *before* you were completely exhausted. I'm sure I would have reacted the same way as you did. But to put it into context, I have no grandchildren to come and wreck my house. My husband would never help out with restoring order after they had gone if we did have any. And never in his wildest dreams would it cross his mind to suggest an out of the blue holiday.
Please forgive yourself for your justifiable outburst. We understand! 💕
And, by the way, have a wonderful restful time when you get there. No lengthy cross country hikes!
You are not being selfish. You are understandably trying to protect yourself because your body is not as strong as it used to be.
I love that whole part of Great Britain, although know Dorset less than Devon and Wiltshire. I have visited Poole. I think there used to be an aquarium there, but is it in Bournemouth now? I also think it was Poole where we visited a wonderful pottery museum.
I'm getting better at not doing everything, but my tolerance for dust and clutter is much lower than hubby's, so.... Ironic, really, as he's the one who's allergic to cats and dust! 😼
I am just quietly relieved reading this thread simply because out of poor MARION7's emotional anguish highlights for me (plus a few others) the lack of empathy & compassion from our darlings - it still irks me after 18+ months but what it has also taught me is that I must find a support network one day soon for myself which I plan to do come summer which is not too far away - its a long lonely journey I've decided despite the fact I still count my blessings at days end. Of course this website has helped me keep my sanity at times.
Hugs & blessings to you MARION7, HeronNS & all other dear souls I have inadvertently omitted
you are not being selfish, during the last 5 years that I have had PMR I have at times had a furious reaction to some of the things my husband has said to me. When the temper gets hold of me (I never had a nasty temper before) I do not know what I am going to say. Fortunately according to the latest consultant I saw last week my PMR has gone into remission so maybe I won't have any more of these furious tempers. I must say that I do feel a lot better. Lets hope it stays that way
No wonder you are feeling so wiped out. Lovely as it is to see families, they certainly leave you feeling absolutely shattered. And that's before the drive to Heathrow, never pleasant, but upsetting when you have to say goodbye as well. I imagine the housework was just what tipped you over the edge, it certainly would have me.
I guess your husband thought he was being helpful thinking that a trip down here would a) cheer you up after saying goodbye to your family, and b) maybe give you a rest.
Unfortunately, even our dearest and dearest don't really understand our illness, and sometimes just get it wrong!
As you've said you'll go, then I think you have to manage as best you can, appreciate what he's trying to do, and try to enjoy it. But I think when you get back home, or find an appropriate time when you are not so upset try explaining how you feel to him again. Saying that you may look okay doesn't mean you are. The slightest change in circumstances, even though they may be enjoyable most of the time do leave you absolutely shattered, and that you cannot just carry on as you did pre GCA.
Do try and enjoy Dorset, it's been a gorgeous day here today, and the weekend is supposed to be okay, maybe a bit changeable. And let hubby do the running about! Hope you soon feel better.
Thank you so much... I have just arrived back home, this is my first stop.
The reason for this late late response is, the poor WIFI. Must say I really felt cut off from you which panicked me.
You are right, the last month was lovely but hectic; saying cheerio to them all was particularly difficult this time for some reason, then returning to a house that looked as if it had been burgled got to me.
I will have a chat with him when I am not upset, he did just get it wrong.
Yes, know what you mean, this forum is a lifeline, this illness does make you feel very isolated.
As we are always saying, because there are no outer physical signs, people, even those nearest to us, just don't get it. If you had a broken arm or leg, people would rush to help you, but because you look normal everybody assumes you are! And you can only explain so many times, before you just get fed up with doing it.
Have a good rest, and then try and explain to your hubby again. I always say having GCA or PMR is like driving a car - when everything is on the level it goes along nicely, but when you ask a bit more of it to go uphill or overtake there's nothing there when you step on the accelerator. Most men can understand that analogy. Might help!
Marion, apart from hubby's apparent lack of consideration (although he did help you with the cleaning, didn't he?!), that response of your's is perfectly normal where PMR and steroids are concerned. My emotions were all over the place and tears were very close to the surface in the early days both during my year of non-diagnosis and on the 40mg high starting dose. It is a bit of a shock when this first happens especially if you are a person who is normally of a calm disposition. Some people have even mentioned that their language became very colourful! You've obviously worn yourself out, so sit back and let hubby do the driving, and I'm sure that if you need a few extra hours resting whilst away, he has learned his lesson! Chin up now, you will feel much better once you've rested and got your equilibrium back....and think of all the lovely happy memories for the future you've just made with your little family.
Oh Marion7 I do feel for you and relate to the scenario you describe, made so much worse by the deathly exhaustion and feelings of isolation that can come with this condition. No one can understand who hasn't had it or got it, so you have come to the right place for a hug. I expect you really pushed yourself while your family were visiting, above and beyond really, fuelled by love. I guess you and your husband are grieving for the little family that has returned to Sweden, in your own ways. He's all busy, busy on to the next thing whilst you've kind of collapsed. The rage will be familiar to a lot of us. It is so frustrating not being able to do so many things we need and want to. Give yourself time to heal and rest and then maybe Dorset will seem like a good idea. I don't expect your husband will make the same mistake again, you see, you fooled him too.
Thank you Sheffieldjane, The rage was awful, difficult to control and understand, it was if I was looking in on another person. Just exhausted I would suppose.
Icy contempt, that's it, an awful combination mixed with rage. I have turned into someone I don't actually like. Thank you for enabling me to express myself without judging me.
Thank you, your support along with everyone else's makes such a difference. All weekend I felt quite alone/isolated. Not so much now with the very kind responses I have received. (Daft isn't it when I have a loving husband)
Hello Marion
I'm so sorry to read your story, truthfully no one except another sufferer has any idea of the fatigue.
You must have been exhausted after the Family Visit, without the drive to LHR & then the offer of a surprise trip to Dorset.
I find travelling in the car tiring but mainly because l still get very stiff & seize up so we stop every hour at the Services when we go on the motorway.
Anyway, l digress have you read Kate Gilbert's Book on PMR? If not I suggest you get a copy & insist your husband reads it! It will give him a valuable insite to this awful condition without you getting emotional. You could also write down how you feel & how exhausted certain things make you, leave it a day, check it & then ask your husband to read it.
The break in Dorset would have benefitted you more next week I feel, after you'd had chance to rest & recover. I think you need your husband to understand your condition more & maybe next time the family come, give the trip to LHR a miss & go lie down in a darkened room & recover.
Marion, pacing yourself is the only way forward with this & if your husband is prone to suggesting weekends away then I think I'd keep a bag packed or at least everything you might need in a drawer so you're good to go!
Be good to yourself & l wish you all the best 💐
Angela x
Because we don't look as ill as we feel ,we carry on because we don't want to spoil things for everyone and then we reach the point of no return and crash .Your temper outburst sounds like frustration and desperation . I have done that a few times when dragging myself home after work during the first undaignosed year struggling to get the washing out of the tumble drier and crying with frustration my arms were so weak I couldn't pull it out .
My husband is very sympathetic from his armchair .Not helpful, just sympathetic hahah ..Don't underestimate this condition until you have got the measure of it .
I don't have the problem of holidays or days out being sprung on me . No chance of that Tell your husband quietly how it works and he may get a better picture .He sounds as though he cares but he can't see what isn't visible and after rest he probably assumes you are ok . Rest then build up .If we over do it then rest we look as though we will be rejuvinated .Maybe explain after rest you need to build up a bit .Perhaps surprises are not the way to go for the moment with this unpredictable condition .I think this is a very emotional condition ,seems to be from 0 to 60 in no time we go from rushing through life unaware of just how much we get done ,to a sudden halt with very little warning . I for one feel now that a lot of my emotional upheaval came from the frustation and shock of it all I don't know if that makes any sense .You do feel like a slapped three year old when you can't do simple things don't you .Then we have the tantrum which is in my estimation at the time fully understandable haha even though I feel really sheepish afterwards. It's just the only way I can excuse my outbursts especially early on in all of this .Not so much now .I know what it is now and that helps temper my naughtiness I hope you are feeling better with yourself today and have a good day .
Thank you PJRW. I did just carry on because I didn't want to hold anyone back or for them to worry about me & spoil their holiday. I'm feeling calmer but still not quite over it, this was a very big tantrum. Really thank full for our friends on this site. Need to have a quiet chat with husband. Take care
Show your husband the answers you have received on this site if he would not be offended by what you have written ,Its an idea .Sometimes a third party opinion which carries no personal context is easier to understand and also he can get some insight of the whole of the problem . He may not be interested I don't know him .You be the judge of that but if you think he will be . There is understanding in the replies we get
Thank you, good idea. He will be interested, he's a kind person. It really must be difficult for others to understand as I/we look so well and at times carry on as if nothing is wrong. I don't really understand myself what's happening to me and my emotional state.
You can purchase a DVD called 'You Are Not Alone' then in a quiet time, sit down with your husband and watch it together.
It was made specifically for family, friends and carers. We found that no only did we not understand PMR and GCA, when first diagnosed having not even hear of either auto-immune illnessess but our families and friends were even more bewildered because we looked well.
Medical people and Patients co-operated in the making of this DVD and there is no jargon. We were surprised at the re-action of our own families and friends to it and finally understanding.
To date over 1000 have been purchased and not once has anyone told us it was anything but helpful.
There is also a booklet called 'Living with PMR & GCA' co-authored by PMRpro who frequently posts one this forum. Again no jargon and full of Tips and Tricks supplied by people who have PMR and GCA.
Might be an idea to help you and your family understand you.
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I hope you are feeling better with yourself today and have a good day .
Spoons Theory
I am so grateful to you people
Surprise!! (off piste)😂
Feeling low
