Does AS make you feel alone..

[sappy]

Hi all,

I have AS and currently experiencing a big flare. Meds not working and just started Methotrexate..

Forgive the rant but I’m struggling,

I don’t know why but I have never felt so alone as I do at the moment.

I keep asking myself Is it the AS that’s dragging me down or is it a bigger issue.

My partner and I have been together 13 years and like any relationship we have our ups and downs. Lately however I don’t feel we are connected anymore and we seem to be drifting apart.

We are set to go on a big holiday in 8 weeks with all her family and that’s creating a lot of tension between us. When she asked if we could go I agreed but asked if we could have a few days just the two of us (we are going to Oz to stay with her family with the rest of her Uk family for 21/2 weeks) she agreed to this but it’s clear that she doesn’t want to do this really so it’s become a bone of contention between the two of us. I have been accused of being stubborn and emotionally blackmailing her because she knows I had also always dreamed of going to Oz with my life partner thus that dream has been replaced with a family holiday to the same location.

As a result of this I have said that it doesn’t matter and it can be all family (even though I don’t know how I will cope with 21/2 weeks of mother in law, sister and brother in law and 3 kids plus all the Oz family without any time to ourself) her comments are really getting to me, she compared me to all our friends and none of it was favourable thus I am left wondering why she is with me?

I always knew this holiday was going to be a big challenge with AS and the pain and fatigue it brings but if things are strained between us now how is it all going to work out, the last thing I’d want is for it to spoil the trip for anyone so want to resolve any issues before we go but fear she’s a lot of resentment to me about all manner of things which isn’t going to go away.

Sorry to vent, it’s all a bit much at the mo,

Take care Lisa x

[AgedCrone]

If your partner doesn't want to take time out from visiting her family to go off for some private time with you in Oz.....why not discuss (& I mean discuss rationally...not just say your not going) you staying home this time.....& just the two of you going on the holiday you have always dreamed of in a couple of years when your AS is under better. control?

It will be difficult to explain to parents when a child is visiting from thousands of miles away for only a short time that you two want to leave the reunion for some personal time. That could cause real aggro!

Struggling to get settled on the right meds for you is very challenging...not only for you but also your partner. It's really hard watching a loved one suffer.....& when a choice like you two are facing is thrown into the mix, things can get really complicated.

Think hard about that long flight to Oz.......unless you are taking the luxury choice of flying Business Class it is a very gruelling experience if you are fit & healthy, but with AS it will be really uncomfortable. When you arrive...will you have personal space to relax......unless your in laws have a very large house I guess not with all the UK visitors?

Hope you manage to sort things out. I'm sure you will get some good advice from posts here.

And remember ......absence makes the heart grow fonder!

[sappy in reply to AgedCrone]

Hi

I have suggested that I could stay at home already but that fuelled the fire as it were.

The people we are visiting arnt inlaws (inlaws coming with us from Uk) they are cousins. I have met them once at a funeral last year and their house is going to be bulging at the seams with 8 from the Uk plus their own family so will have no space as it were. It’s a fair point u make though from my partners perspective. The last thing I want to do is create aggro.

That’s what I don’t think my partner really understands, how can she when she’s well and healthy. She can’t get just how hard the whole holiday is going to be physically without adding emotional issues into it.

Hopefully it will resolve somehow!

Take care lisa x

[AgedCrone in reply to sappy]

Let her read some of the posts here...it will put into perspective all the pain & despair this disease causes.

Looking at it from her side.....she wants you to be involved with her family. If you don't go.....they may wonder why....they probably don't understand what you are going through....& she won't want to have to make excuses for you?

She will be thinking if you do stay home you will bring it up in the future & play the martyr whenever things get a bit strained. Can you get across to her that will not be the case?

Do you have a close enough relationship with your in laws to tell them much as you love your partner ...right now you feel so ill you would probably need to see a doctor in Oz? The flight would be a big strain on you ...& being a pre existing condition your travel insurance will not kick in....so you & your partner could entail big medical bills.

Your partner wants you to go....quite reasonably you feel neither of you will enjoy the trip if you are in pain or drugged up to the eyeballs all the time.

Pick the right moment & tell your partner how much you are dreading the whole thing & ask if she would please reconsider you staying home? Partnerships are 50-50 ...do try to settle things amicably soon, so that when the time comes it's not Boarding Passes at dawn!

[sappy in reply to AgedCrone]

My partner is very clear that I am going with them, as far as she is concerned not going isn’t an option.

I have said what you mention to her and assured her it’s fine, I just want her to have an amazing time with her family without the stress of me being there undoubtedly struggling to keep up, a 5 yr old, 11 year old and a 13 year old do not understand Auntie Lisa isn’t at her best at the moment when they want her to play all manner of Oz games in the pool and on the beach.

She just says I can rest when I need too and I’ll be ok as she has told her cousin I have AS. 😳

My in laws know my situation but don’t get it and will still ask me to do jobs for them even when I’m in loads of pain so I think they will just want to keep out of it and expect my partner and I to sort it between us.

I think oramorph and tramadol are going to become my new best friend, I have no idea how I will get thru the fatigue side tho..

thanks for your wise words

Take care Lisa

[AgedCrone in reply to sappy]

Before you go ....if you go...do check the position about taking Tramadol into Oz.

You can almost get Life for smuggling in an apple down there!

[Hidden]

I think it's really difficult for others without this to understand the impact it has on your life, especially fatigue and need to pace yourself. My rheumatology dept always invites partners to support meetings e.g. Getting to grips with disease etc. Do yours have these, could you go together? No relationship advice, not qualified there 😀 but stress not good for this. You must be exhausted: flare and just started meds etc too. Good luck whatever you decide, early days most depressing of all i think, takes time x

[sappy in reply to Hidden]

Hi

My partner did come with me in the beginning but she doesn’t any more and isn’t one for groups. I asked her once to come with me to a NASS meeting but she wasn’t keen so I haven’t asked her since. She says she understands AS and how it affects me cos she lives with me every day.

Hopefully the Meds will kick in and I’ll be amazingly well for 8 weeks time (Can live in hope)

Take care lisa

[sylvi]

You two need to sit down and really talk. Get paper and pens and both of you write down how you feel. 1,about your health. 2, about being together 24/7 with her family etc. get what i am saying. You don't want to go over there and have a massive row and break up.xxx

[sappy in reply to sylvi]

Hi

Yes I like your idea lots and I have suggested this before with no avail.

It may be time to revisit the suggestion.

That’s it isn’t it, it would be a shame if it came to such an awful conclusion. Hopefully we can work it through.

It’s always helpful to have another perspective.

Take care

Lisa

[helixhelix]

Do steroids work for you? If so it might be worth speaking to your GP/rheumy to say that you are worried that you won't cope with the journey etc etc and can you please have a course of steroids to keep you going?

I think it's a good point re travel insurance too, as you are risking some expensive bills if things don't go to plan.

[sappy in reply to helixhelix]

Hi

That’s a good idea thanks

I have had varied success but it may be worth an ask as I am seeing the rheumy at the end of Jan anyway.

Hmmm I hadn’t thought about the travel insurance issue, may have to raise that anyway.

Would be a bugger if I had to stay in Oz Not! 😂

Take care

Lisa

[helixhelix in reply to sappy]

I tend not to bother with travel insurance a lot of the time, but for that sort of trip you'll need it. And one that properly covers you for your AS. I think Aged Crone was perhaps thinking of health insurance when saying pre-existing conditions are not covered, as you can get cover on travel i sura ce you just have to tell them and make sure it is clear on the policy document.

[AgedCrone]

It's sneaky.....but if you exaggerated your AS...you might be refused Travel Insurance unless you paid a HUGE premium on the policy.

Fill in a few Mock application forms & see what comes up!

A girl's gotta do what a girl's gotta do!

[Amy65]

Hi sappy I to have anklossing spondlittis yes it does make

Me feel very lonely .me and hubby have nothing in common hope ur ok amy

[Gnarli]

We made the terrible mistake of being honest on our travel insurance and told them of the chest infections I had last year. Upshot is they will still insure me for travel but have excluded any claims for treatment for chest infections/lung issues. This could be expensive if I'm taken ill in St Lucia.

[sappy in reply to Gnarli]

Eeek that sounds worrying,

Fortunately I have ongoing travel insurance via my job so my assumption is that as I have been paying in since way before diagnosis there should be no issue. I keep getting conflicting advice re whether to contact them and raise my AS specifically because I am currently having a lot of problems with it.

It’s a minefield!

I hope u Have a good hol with no chest infections 😊

Take care lisa

[Gnarli in reply to sappy]

Aww that's kind. Don't worry, if things go pear-shaped I'll simply offer Himself's kidney as part-payment. As to your insurance, we declared my RA and there were no problems at all and its though our bank account. If, however, you decide not to tell them they may use that to wriggle out of paying up should you be unlucky enough to have to make a claim. Devious weasel words hidden in the small print. Travelling all that way when in pain just to have little privacy or alone time with your other half sounds nightmarish to me. I don't have any answers but sincerely hope you can solve your dilemma. Hugs

J

[sappy]

Thanks, some valid points there

I have checked my policy and it’s very clear about when we do need to raise specific illnesses and AS / my situation doesn’t apply specifically. I’m reluctant to raise it coz I can see them quickly piling the policy if I do.

Yes I am worried about it all and just hope this current flare subsided and I am back on track Meds wise before we go.

As for the privacy issues I’ve given up trying to reason with it all and will instead use my energy to focus on getting well again if I possibly can.

Take Care Lisa

[Kai--]

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Do you think breaking out the spoons 🥄🥄🥄 — sharing the ‘Spoon Theory’ ( healthunlocked.com/nras/pos... ) — with your beloved & the family, sappy/ Lisa, will go a way towards helping them understanding the current depth of your unwellness? 🤔

It might help them ‘get it’ (understand) a bit better? 🤔

Onlookers — even close loved ones, family, friends . . . — just can’t comprehend the depth of our unwellness/ incapacity just because they’ve never experienced anything like it. 😯 (It may be near impossible for them to grasp it. 🤯 )

If "🥄 Theory" fails, maybe a ’Simulation Suit’ (scroll downward on ‘Spoon Theory’ page to see 3 videos) might strike a chord 🎶 ? 🤔

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On a different, perhaps cheerier note 🎵, there are AS-ers (Ankylosing Spondylitis-ers), Cherie, Mark, & Katie ( healthunlocked.com/nras/pos... , healthunlocked.com/cure-art... ) who are doing well. They may have some welcomed thoughts on how to use your energy to focus on getting well again (if it’s possible) & perhaps even help you feel far, far less alone 🕴? 🤔

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Very best wishes, sappy/ Lisa, however the trip to Oz 🌏 unfolds . . .

Don’t know if clicking together heels of ruby reds 👠👠 will return you back home fast enough, yet fingers crossed 🤞🤞 all will work out better than anticipated. 😌 🙏

Please take kind & loving care of yourself, Lisa. 🙏 🍀 🌺 🌞

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m.youtube.com/watch?v=Ddz0G...(Not working as expected?)

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