My hubby keeps asking me where do you want to go on holiday, but it's not difficult deciding where, my problem is I'm finding it harder & harder walking getting excruciating pain in my legs,feet,hips legs feeling so so heavy at times, and I'm afraid that if I go I'm going to ruin it for him. He does not cope too well with my condition and never talks to me about it either.
Iv thought about getting a wheelchair for while I'm away and use it as a walking aid,then if I get bad I can sit in it,but I'm not sure how my hubby will react if I suggest it.
Thanks for all your posts I find they help me a lot with not having anyone I can talk too about my Fibro .
Can I just change my name when I post , to Lizzie instead of Grannie crochet.
Thanks
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Lizzie57
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Eastbourne on the South Coast, you can get anything for our problems, what is great that everywhere there is a bench to sit and rest on, hire a mobility scooter, and there are hotels for all budgets, I stayed at The Grand, expensive but what an experience, I am very lucky, I have a wife so, understanding to my problems
I sincerely hope that you are feeling as well as you possibly can be today? It is a difficult issue to raise if he is not too keen on discussing it? However, it may be best to just come out with it and suggest a wheelchair? You could say that you feel that he is uncomfortable discussing it and you do not want to upset him by not being able to walk on holiday (as he loves you so much) and so you think it is the best solution for the duration of your time away?
I want to genuinely and sincerely wish you all the best of luck.
Love the name. I understand only too well the holiday problems. It is so easy to find one that looks so perfectly ideal for you. Sun sea streets to potter doan steps hills slopes in and out of boats. Sorry just some of the pit falls end of the day only you know if it would be a boon
I have continued holidaying as I have continued getting increasingly more wheel chair bound. It does make days out easier to manage as long as OH can help push when the gowing gets tough. If you do decide to take wheel chair do get one with tyres like a bmx bike they make cobbled streets and field easy to push through and are majic for self propelling.
At the end of the dAY only you will know if it is a boon. Flying with a wheel chair is fun you book in differently and they take your chair away and take you through the air port at high speed you become first on last off. Life is an adventure go for it.
Hi I'm exactly the same, if we go out for the day il not even take my walking sticks never mind my wheelchair, my wife and kids say they will push me but I'm embarrassed and also think they shouldn't have to. At home it's the idea of friends seeing me, in my mind I think I should push myself more but my body can't take it. What I have realised that my family understand my illness more than I thought.
I was told at the pain clinic...get out in any way you can, for some they need sticks or a wheelchair. So whatever you need even a wheelchair go on your holiday and enjoy yourself. This is a dreadful illness and a change of scene might do you the world of good. X
I'm so sorry you've got the added burden of thinking of where to go ( we all know under the duvet is what we long for!).
I've had rubbish health for 30 years, since 1985 and had to do the holiday thing ( never made it abroad) when I could for the children ( they were 5,7 when I became ill, 3 months into my illness I became pregnant through choice as I didn't know how I'll I would get!). Caravan holidays were my best bet as I could rest when needed. One time we rented a cottage and I was bed bound for the week so my husband took the children out, I think everyone thought he was alone ha ha.
I still struggle with my health on a daily basis, having to have odd days in bed. Now that the children have grown, we were considering opening the side of our house ( my husband was a builder!) as a holiday cottage.
You have reminded me how hard it is to find somewhere for holidays when not well and I believe we will do it, if only to be able to make someone's holiday healing.
Thank you for your post, I hope you manage to find somewhere that will suit both of your needs😊
Take care
Carol x
At the moment i have two wheelchairs. A self propel / someone push for a shot trip to large shops and shopping malls. It is agony on my arms and hands and hubby has several health problems. So for days out, holidays and dog walks on hills i use a power chair, Which is very heavy to get in and out of the car.
Something that we are hoping to solve soon.
Without these i would not be able to get out and about and would recommend to any one whos life is being restricted by mobility problems to just go for it.
We holidayed with relatives a week or two ago and their son is in a wheelchair, did we get some strange looks. especialy the wheelchair races on the prom and round the caravan site. did i care, no i was having fun and more importantly so was he, as well as giving other people a smile.
Don't ever feel alone, my husband rarely talked about my illness over the years, I found it very frustrating and couldn't understand why until last year when he had a mini stroke followed by a seizure... Yes you guessed, he doesn't talk about his health either,
I have to research for him as he's an ostrich! I think sometimes they just don't want to admit there's a problem!
I'm always here if you need to offload, don't be too brave!
Hi there so sorry to hear you so alone with your condition it must be torment at times. I guess your hubby has trouble acknowledging changes . ( really hoping your relationship starts to work it self out ). But with that aside I have a little four wheel walker that I use when I walk any distance and this means I can sit. Its not the best I personally prefer my crutch and mobility bike. A real little one of 4 miles per hour could be a godsend for you and help you manage your pain. Well really hope your feeling as well as poss as for me in a massive exhaustion flare. But ill manage it eventually always do. Wishing you well
Oh why oh why do we feel we have to apologise for our bodies.
Funnily enough I was mulling over the wheel chair option this morning. I did resort to one last year for a bit. I want to make the best of the sunshine today. I am lucky and mobile but have a lack of energy. If I go out to play I will not be able to function and feel sick dizzy and wobbly not to mention the awful fog will remain for days. I feel guilty because I look hale and hearty.
I think we should just go for it. Lets face it in reality we will soon all be pushing up the Daisy's.
seize the day and go out to play.
Only problem is will I take my own advise.
Throwing you a huge handful of star dust. To weave your own magic.
Good luck chuck. Failing a wheelchair book into a luxury hotel with friends they can explore and you can let the staff spoil you with all manor of delights. And pick things you can manage with to do with them.
Hi I know how you feel, a partner who promises to help says he will do anything you need as he loves you etc etc....but if you even ask for coffee at the wrong time you are made to feel like you just ask him to run a marathon, paint the whole house and then some more...why oh why is this illness so bloody crap we are stuck you try to do things yourself and are told " I would have done that if you had asked " well if i do bleeding ask you moan and if i do it. Myself I bloody hurt after ( why unless you are a man who has/does suffer ) do you not understand how I'll we sometimes are...unable to even make it to kitchen without falling over due to numbness and pain...
A wheelchair omg! I had to have a stick to walk last time I ventured out, u would have thought I was on my own he either walks in front or way behind ( says its embarrassing...said recently am I only doing it to try and claim money!!!! ...well I would have hit him with the stick if i could...
I think comments made on here about hiring a wheelchair or mobility scooter while you are away are sound advice you won't feel you have to find even more energy each day and you hopefully can enjoy your break...one more thing, if you do visit a holiday camp...ask if they have either a chalet or a disabled caravan for you too hire as you have more room and aids are already there....happy holiday sorry for long reply ( I even had to stop half way through as got locked fingers lol)
I have the same problem with my legs but my husband goes a bit over the top trying to organise things to help, we went to Lanzarote a few months ago and hubby arranged for a mobility scooter to be dropped off at the hotel the day after we arrived, best thing i ever done, i sometimes use my scooter at home if we are going out. You should try it.
I am having the same problem. My husband wants to book a few holidays abroad and I try and tell him I am not up to it and he doesn't take it too well. He is quite sceptical about my condition and often says how come some days you can walk the dog for an hour and others you can't. I try to explain but he really doesn't get it! I only feel I can cope with a holiday in this country but he wants the sun. I have told him to go with a friend and I will stay here. I am not being a martyr but I don't want to stop his life as well as mine. This bloody illness messes up your life.
I can relate to walking the dog. This bank holiday w.end I made myself walk one of my daughters dogs both days as if I hadn't I wouldn't of gone out. It's a catch 22 this condition isn't it. I feel anxious when I don't do something and stressed when I do. I have had fibro since 2007 following an op to remove both ovaries
Wish they had left them alone but I hade cysts on both so Dr said they would remove them just in case. Hormone . Up in air ever since. Be nice to keep in touch with a few fibro sufferers. May I add u to the list ?
Yes by all means add me to your list. I force myself to walk my sons dog most days because otherwise I would be doing no exercise at all and am now not working so the days are long. I also feel sorry for the dog being left all day. I was diagnosed with CFS in 2010 after being off work for 12 months with terrible pain and just felt so weak and couldn't do anything bar lie around. Got sent to all kinds of specialists who couldn't understand the pain and eventually a neurologist said he thought CFS was the probable reason. My GP said it was fibro as well. I was made redundant in 2011 and at least now don't feel the pressure to try to work although I miss it. I feel sorry for people who have to carry on. It's bad enough putting on a happy face for family. My stock phrase for anyone asking how I am is now "not bad" Tell me a bit about you if you are ok with that. I am 63 and have 3 grown up kids and 6 grandchildren.
Hello agai . I'm 52 2 children. 20 and 24. Diagnosed 2007 after op to remove ovaries and 2 cysts. Problems started straight after op. Live in w. Sussex. UK will send more info tomorrow
buying a mobility scooter was one of the best things i ever did. Initially i felt that people were looking at me and thinking "stupid fat girl cant walk". but eventually i had to get over myself, fact being that if i didnt use one i would be housebound. also it made me able to get further and not hold my partner up. We did get a travel scooter which broke into pieces to go into the car. Now i have an electric wheelchair as it allows me into more places by being less bulky and the bit to steer is easier to use when my hands hurt.
i am lucky to be able to get a really light wheelchair and a partner who is happy to lift it in and out of the car. But there are hoists you can get or ramps which makes it easier to load.
We're going to Cornwall in June and I'm seriously thinking about taking a wheelchair with me. I currently walk with two crutches but I'm finding it harder and harder to walk. Last time we went somewhere and had to hire a wheelchair I cried- I hated it. My Mum in her infinite wisdom said I don't even need my sticks and shouldn't be using a chair but the fatigue gets me so bad
Cant say much about holiday choice but I think to change name you need to "delete" yourself and re register with a new "handle". Lou will know how to do that.
I think the Christchurch area is ok. Lots of level proms, but cliff top "walking/wheelchair" paths are available and Hengistbury head is well endowed with paths.
Hi Lizzie
Your Pain will be there if you are home or away. I find the keys to maitaining a good quality of life are
COMMUNICATION - With your partner, have you both sat down and discussed the changes to your relationship as a result of your illness? This may seem daunting at first but you will feel much better after you've got everything out there. Maybe write a few of your worries or fears about this down first. Note how the dynamic of the relationship or family may have changed and how this effects you and everyone else. Write down how you feel you may have changed, how your needs have changed and what others may be able to do to help you both physically and emotionally. Explain what fibromyalgia is, how it affects you, what helps you or hinders you.
ACCEPTANCE - It is a long road to accepting your condition, not just you but others too. Acceptance is not to give in or lay down to pain but it is to make peace with it. You cannot fight what is within you! Acceptance can bring you freedom from worry and fear thoughts.
PLANNING - Organising your daily activity is a great way to limit the 'over-doing' and 'under-doing' cycle that can create a flare-up of pain.
Time yourself whilst doing whatever ie sitting, standing, walking, driving. Notice when the pain increases -STOP- change position or return to that particular activity after a short break. This will make you more aware of your bodies limits and can prevent pain increase.
You can apply this to all aspects of your life and it WILL help you so much.
I have taken six breaks to complete this email! I learned these skills a long time ago whilst on a residential pain management course at St. Thomas' Hospital, London. It is available on the NHS (at the moment!) although the list is long as it takes patients from all over the country, but very worth the wait!
HOLIDAYS - You still have a life! It may not be the old one but contiue to enjoy new things, places, people. Pace and plan your activity step by step, if it's in the UK or abroad. From the journey to the airport, at the airport, once abroad. Do not be afraid to ask for help. This will help you minimise your pain levels. Communicate with the tour operator and airline, ask for assistance by way of buggy within the airport as the departure gates can be a fair way!
Request low level accommodation, near the resort facilities. You'll be suprised what a difference this can make. Visit your GP prior to travelling to plan ahead with regards to the need to manage any flare-up. You may choose to increase your meds prior to travelling to cope. You may want stronger medication just in case. You're GP may have other suggestions to help you.
Try to relax,have fun and enjoy the change of scenery! Have a wonderful time.
I like the idea of some Sun but dread the idea of an actual holiday. I used to love to travel and to see something new at the drop of a hat! I proposed my wife and son to go on their own but they are not playing. Most years we go back to Donegal where my wife is from, there are lots of distractions so I get left alone a lot. My son has close cousins there and they go pier jumping, horse riding etc. I am happy with a pile of books and my iPad, my connection with the world. I have two or three meals with the clan and two or three gentle days out. Plus a dawdle at the local village or beach. I am happy with this but it really is on the edge of my abilities. But the peace and quiet and looking out the window at the mountains and sea is wonderful. One of the problems as well is my wife is a forceful woman but would leave organising holiday agenda etc to me and doesn't like the change.
I am a 46 year old, ex military, alpha male who swallowed his pride and uses a wheelchair when needed! It has to be an assisted push along one as I have problems with my arms too. If the smartest man on the planet, Stephen Hawkins, uses one well it's good enough for me! What other people think is their problem not mine!
Does you husband like golf? He could spend the morning and afternoon playing!
Suitable couple and family outings is still something I chew on.
Best of luck Lizzie!
Ps Wheelchairs are great for hanging your shopping off too. Always look on the bright side of life!
Hi there Lizzie....like many others, I really sympathise with your dilemma......
May I ask how long you have been married? Would he be open to reading this blog, do you think?
Fibro is a really hard for others to understand, not just husbands! Even GPs and Consultants scratch their heads over it.....
I have a lovely Doctor at the Pain Clinic (lady) and she has a plausible theory that one of the factors is the amount of chemicals in household products these days, plus the fumes we breathe every time we venture out. Because of this, I have made the effort to change to natural products wherever possible - and it HAS helped.
My hubby needs to get away too, and he loves the sun and sea. Because I care for him and realise how important it is to have a change of scene from the day-to-day slog, we do research suitable places using Trip Advisor. I find my symptoms ease somewhat when we are breathing fresh air, in not-too-hot Mediterranean coastal places - and the food is generally more appealing than here in the UK. He also doesn't mind if I stay in the room and rest while he goes out and enjoys himself. Sometimes we need a "holiday" from each other!
As some of the other replies have said - Airports really go out of their way to help disabled (request Special Assistance in advance). There is NO QUEUING (your husband would like that!) and an Ambi-lift to board (with or without wheelchair - you can request one at the airport if you don't want to take one). You can even pre- book extra leg room for a small extra charge. Keeping luggage light will help too.
Going to somewhere like The Algarve in Portugal for a WEEK is less expensive than a comparable place here in UK for a weekend, and is just a short flight from your local airport.
I do hope you can have a holiday, as am sure it will lift your spirit and help your hubby to understand the effort you are making on his behalf.
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