Summer holiday worries

[KimSawyer]

I have finally just recently got my official diagnosis of fibromyalgia, and adapting , or trying to to my new way of life and all it’s new restrictions, my partner wants me to book our annual holiday and there’s something stopping me from doing so. I am worried about the travelling , how I’ll feel, I’m anxious, unlike me, nervous and apprehensive. What is it like going on holiday with fibromyalgia, what’s your experiences... part of me just wants to stay home in my well not so comfort zone, but then, is this it for the rest of my life?

[Mandypandy1969]

I have just been on holiday to Cornwall and got back not long ago. I know I will suffer for the next 2 weeks or more. I went away for just a weekend and was wiped out for a few weeks. it's learning to pace yourself which is so hard. I enjoy my holidays when I go and know I will pay for it afterwards but it's worth it. go on your holiday but chill and don't go here there and everywhere is my advice. I have had to slow down to a snails pace compared to last year. things don't get better, they get worse. it's learning how to cope with the condition. it's not easy for any of us I am afraid. just being honest with you. xx

[KimSawyer in reply to Mandypandy1969]

Thanks mandypandy, it’s certainly taking some getting used to. I was an upbeat, bubbly 100 miles an hour person and cannot believe the change in myself, mentally as well as physically. But I’m hoping I’ll adjust and am doing my best not to be really dragged down, thanks for your honest answer

[Mandypandy1969 in reply to KimSawyer]

I am finding everything so hard ad fighting d.w.p. for my e.s.a. which was stopped. only get 73 quid a week as had to go onto assessment rate again until tribunal has been and gone which is 3rd of August. I get so depressed having no money to myself and this condition on top of my mental health problems get me lower and lower. most of the time, I can hardly function. fatigue is so extreme, muscle aches, soreness like sunburn feeling. feel like a rag doll. no life in me and no strength in my limbs. the list goes on. also have suspected sjogrens which I am starting steroids tomorrow to see if they help, if they do, I will be put on a med for sjogrens. no 2 days are the same and I don't have many good days. xx

[KimSawyer in reply to Mandypandy1969]

I’m hanging on to my part time work desperately, but am struggling more and more to do it. It’s quite physical and I can only get through it most days with painkillers. I get home and collapse, I am worried about the future, and like you, all the symptoms you describe sound so similar. I honestly never believed such a thing existed . I shall keep my fingers crossed for you though for the 3rd, I think it’s terrible that we are put through what we are put through with this illness, it’s bad enough trying to deal with it on its own. Please keep me posted x

[Mandypandy1969 in reply to KimSawyer]

I can't believe how little I can do now. I used to walk for miles on holiday but can't anymore. it takes so little before I am exhausted, ache and get the soreness like sunburn feeling. no 2 days are the same. I haven't worked for 3 years. no way could I hold a job down. d.w.p. are complete arseholes putting people through so much stress. I used 2 walking poles on my holiday this time to help me as I do go off balance at times and they do help. I will keep in touch. if you ever need a chat, always here. xx

[dannyxox]

Hi Kim like mandy says it's all about pacing urself. I couldn't give up my holidays as it's the only time I feel my pain is bare able as the heat helps me I don't spasm as much. The weather here has helped a lot the best I felt in years. My mum n dad take me n my son on holiday every year I'm actually waiting on them picking us up just now we're are going to santa ponsa for a fortnight😎 I don't go out much here because of my anxiety and spasms I get embarrassed going out but on holiday in can be myself n twitchy away as I don't care what people think as not going to see them again. Don't give up ur life you need to say goodbye to the old you and make the most of the new you life's too short. Xx take care gentle hugs 😙😙

[YASMINTINA FMA UK Volunteer]

I totally understand as I’m feeling the exact way right now and not booked anything,the only thing I could say if it’s just you two you will be able to go at your pace and not worry about others, my daughter goes off soon for 2 weeks with in laws again , both got caravans but this is not really helpful to my situation and although il miss my grand boys very much a good starting point for me to start with something with my husband only . He has booked a couple of days next week 50 miles away it’s supposed to be a surprise but I’vehad a rough idea but have not said , baby steps for me. So I wish you a happy holiday can you try something in this country? With no airports , ferry’s trains etc . Let us know how you get on . Just posting a link you might find helpful healthunlocked.com/fibromya... posting xxx

[rosewine]

Yes it is rather daunting. I too went from someone who would go walking with the dig say in Scotland for 5 hours at a time to being exhausted traveling in the car. Whatever you book make sure you factor in little rests when you travel and don't just throw yourself into the holiday straight away just have a half day of rest. Factor in activities each day that are restful with something more active on alternate days. Don't leave packing to the last day but decide what you are taking and gradually start packing over a few days. You might find when you come back you have a bit of a low and more pain for a few days so give yourself a nice rest but I think it will do you good mentally to be away from home.

Enjoy it I am green with envy as we have had to forget about a holiday for a while as my OH has been waiting for a date for an emergency Colonoscopy. We prefer to go away when it is quiet as he isn't well either. Let us know how you get on.x

[Hazel_Angelstar Administrator FMA UK Staff]

I personally do not let having fibromyalgia or any health condition stop me going on holiday or doing any activity.

Yes. It requires a bit of forward planning and organising.... Hope are we travelling.... By plane, book airport assistance etc, by car.... Allow time for plenty of rest stops.

On holiday.... allow time to rest, plan activities, be flexible etc

But most importantly.... I go with the intention of enjoying myself xxd

[Dinkie]

I agbree with Hazel Angelstar. Yep - after diagnosis there is a period of re-adjustment but to be honest I was the same person with or without the label fibromyalgia. I had to give myself a stern talking to in the carpark of the hospital after I got the diagnosis. I was still the same person I had been half an hour beforehand except I had a label. Yes I do mourn for the person I used to be but without fibro I wouldn't have met all the lovely people on here and I wouldn't have had the reasonable adjustments meeting at work which enabled me to reduce my hours and have some adaptations made to my work environment so it's not all negative. It has also made me a more tolerant person and I now appreciate that not all disabilities are visible and make more allowances for people generally. The best bit of advice I can give is positive mental attitude - yes things take planning. I compete my dogs so the week before Crufts I take off from work and then I take the week after to recover. If I want to go out then I go but plan easy days before and after. Fibro hasn't stopped me just made me reassess what is important and what isn't.

Certainly having fibro will sort out who your real friends are but is that such a bad thing?

[Paige1999]

Hi i know how you feel. Only diagnosed 3months ago and I find it really hard to push myself to try and have (a normal life) as people keep telling me to. Everything has progressed quickly for me ,I'm having to use a walking stick and feel like a old lady most of the time. I'm only 55 and it's so hard especially when people say just take a painkiller and you will feel better. They just haven't got a clue. Just keep battling on . I hope you get all the help you need.