When I became diagnosed I found it really difficult thing to accept, to go from a really independent person able to do things all by myself without thinking or needing to pre-plan things to now having to really think about how much energy I’m using and things I am doing.
It took a massive toll on me and my family I know my mind became over active and again started questioning everything from myself and thoughts and also to a certain point of how people felt about me and their perceptions of me.
Things are going better now it’s taken a long time to to get to this point but even now my mind is quite often overactive I have a think things and I’m certainly much more nervous and I are used to be with a lot less confidence.
I think a big part of it is finding me again remembering the things that i used to enjoy but also things that I like to do now and also finding myself as me excepting the way that I am now. I went to the gym today not to use the gym to go swimming and only managed four lengths of the pool before I couldn’t actually move any more. I had to get out of the pool struggle to the changing rooms shower get dressed by the time I got home I was absolutely exhausted I was no use to anybody.
My wife and I have always done things together and certainly for the first six years of my children’s upbringing we have very much enjoyed each other’s company each evening and I’ve not really been out separately on my own. My wife is now working part time couple of evenings a week and I find it difficult to decide what I want to do when she’s not here what I want to eat what I want to watch an how to spend my time.
I feel a little bit lost and is quite a strange feeling. I’m getting better at it and it’s easier certainly now than it was a few weeks ago to be on my own which I haven’t done even for short periods at a time in quite awhile.
I’m certainly not complaining I don’t think that this is a terrible thing or situation to be in in fact I know that it’s a wonderful thing to have a partner who loves you for everything that you are and children who are just magic.
I’m posting this I guess to ask if anybody else has had similar experience also for those that are going through at the moment just to say that you’re not on your own.
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I am so impressed at your swimming, well done! It is a massive thing to start to take control of your choices and time again, building confidence and independence will take a while but celebrate the small steps.
We have a close friend in a very similar place who was hit hard by MS and side effects of his meds. The role reversal, with his wife becoming the breadwinner, and accepting new ways of parenting together and running the home took a while to adjust to. The family now see the blessings in small things like dad being around to chat to and read with after school, they got pet rabbits to enjoy at home, and his weekly gym trip is an adventure they all like to hear about later (when he is lying down recovering!). His mates come round once a month and no-one expects a homecooked meal, but everyone brings something or a pre-prepared “Cook” meal so they can just hang out together without any pressure of preparing as he gets fatigued easily. Discovering podcasts and radio has been good but also just brainstorming the things he used to like and planning the next week in advance. Even planning the weekly meals together on the weekend makes the mini decisions easier.
In our house we had a flavour of the role reversal recently as my husband had retinal detachment. It was interesting to discover new things to fill the day with when you cannot see and are forced to lie on your side for a whole week with no chance of working/ emailing etc. The podcasts and Audible app were used a lot! We also talked so much more about hopes and dreams for the future and reflected on where we spend our time and energy at the mo.
Good luck with setting the pace and finding your new activities.
Thank you thank you thank you for sharing your story below.
We had a major shift in role reversal about 6 months ago. My wife and I always shared everything - both worked full time and fully patented both our children together very equally.
We found that by me concentrating on working full!time - but earlier starts & finishes and her leaving work to be at home full time meant we balanced much better.
I worry far less about home as it’s taken care of, I worry less about the strain of it all on my wife and our kids are happier too.
With less stress there it meant I could focus better in my job which in turn helped us too.
I sometimes feel quite isolated for a number of reasons but outside of my anxiety I am in a much better space.
Just need to get better at becoming a more independent me again. I think that’s the last part of the puzzle.
And yes - podcasts and audible are abolsutely priceless!!
I think this Weds on BBC TV is Nadiya Hussain talking about anxiety, can recommend Matt Haig’s books for men and honest conversations about anxiety, plus Olympic champion Dame Kelly Holmes is promoting exercise for mental health and her podcasts with famous people are great at breaking down the stigma about anxiety or not feeling 100% . google.co.uk/amp/s/amp.theg...
I met Dame Kelly Holmes about 15 years ago at a round table event. She was lovely and at the peak of her career too. Would never have known (not that I would have) that she would have been in that position.
Thanks for sharing this. I've really struggled with poor mental health since being diagnosed 4 years ago. It feels like a bereavement, grieving for the future I thought I had. I'm 61 years old and have that "time is running out" feeling on top of my condition. Thank goodness for forums like this and the support we give each other!
I never really understood my condition particularly as I have the neuro variant which narrows understanding even more.
I happened to google it again recently and found that behcets is being recognised as an arthritic condition now.
This made so much more sense and gave me a really solid view to deal with the physical exhaustion. It also meant I could put it in a compartment and know that when I flare it’s not the end.
It also meant that there was advice there starlight away rather than sifting through the unknown.
The neuro is hard enough as it is but I am now suffering the joints now too.
Hi am currently going through the trying to accept that my life has changed, struggling daily physically and emotionally. All areas of my life are affected. I really don’t think even the medical professionals realise how much pain/fatigue and emotional stress we face on a daily basis. Thank you for using those words ‘you are not on your own ‘ because that’s exactly how it feels. 🤗 to all that struggle daily with this awful illness xx
Sharing your feelings and how you are coping rings very true with me. It is a very hard thing to try and overcome much of our previous lives and for me this was giving up a job I loved, never even knew I had Behcet's or EDS then and I took up a new life of country life looking after our home and extensive garden, growing vegetables looking after my husband, and 2 big dogs until I could no longer cope with this and my fantastic husband came to the rescue again taking over many of my jobs in the garden, sadly bith the dogs have passed on 😂
I have always been very independent and now I feel I have to rely so much on my husband who is brilliant and could not be more supportive, but I find this at times makes me agitated and makes me feel useless and I chastise myself and recall this independent lady who never asked anyone for help and had a carefree life with no health issues. I question my life frequently and dislike myself but I do have to say I constantly remind myself of how ill many people are in the world and I have nothing in comparison and to pull myself together...
But now I have to really think through what I am doing, how this will affect my body, am I capable of doing things... I drive very little now and yet I love driving, I love swimming, gardening and exercise but all of these have a detrimental effect on my body and have to be done in moderation, I yearn that magic pill, and that I will start to feel better soon and I do have some really good days but I expect like so many others these are the days when our minds over think our bodies capabilities and we then overdo things and suffer. I dislike those monotonous jobs that leave too much time to think, washing up, ironing, cleaning where your mind runs away with you, keeping my head busy is so so much better for me but hard these days with the weird things that have started going on with my head but I really do try.
I plan so much in my head and think what I am going to achieve the following day but very seldom do I get those planned items complete. So rather than trying to plan each of my days I now write a list of things I need to do when I feel I can and this works better.
I also have a list of places we would like to visit because I get very agitated at times and feel pent up, odd because I live very rural. We just drive out to one of these places and if I feel like a walk, a coffee, a visit to a garden centre, a historic building, browsing the shops this helps. I also have a list of recipes to cook so I like to make these and store others in the freezer for those days I just feel not able.
I am a researcher and now do lots of research for other peoples family history which has been interesting over the last 20 years and is my go to place when I am not able to do too much because my body is playing up and I want to fill my head and mot think too much about me. The problem I have with this is sometimes my research turns to looking up more about my own health again...
Maybe if you feel like it you could look at planning a list of future trips out, holidays, visit a tourist information place and see what is located around you, take some leaflets home. Cook up some nice meals for you and your family, treats that you can enjoy on your own and together, experiment. Think about a hoby that you might never have tried that takes little out of your body, another thing I took back up from my childhood was identifying the many birds I get around where I live and now I have loads to watch as well as learning about them. I also visit a local river to me with a gentle walk, I find water very helpful with my mind 😊
Take care and hope you find yourself things to do that will help you on your journey.
I’m new to these chat forums, I had Behcet’s since being diagnosed in my early 20’s, I’m 38 now and it’s affected me neurologically. I’ve multiple episodes lasting a couple of years that have been effectively written off to it. It’s strips everything from you. Each day is like wading through a can of treacle literally. However, each time though, it sort of resets completely my expectations from life. This is a positive thing as, although it’s very hard when you are literally in it. It sorts through your friendships, the people you surround yourself with, your values, your job prospects etc, you then just accept and expect different things. The biggest issue I have is the speed at which the NHS responds when you are unwell, especially in providing the more expensive treatments, it makes it difficulty maintain things you would be sad to loose (like job) if you don’t need to, as you may respond to a treatment that it feels is unescesarily difficult to access. That’s my biggest frustration. The rest of it I’ve got so used to and try to be forgiving of myself and take it day by day. You get better at learning all the side effects and ‘managing’ the disease, until it presents something new.
Good for you for posting I no how you feel I tryed to explain to my hubby that I get tired and I have to sleep he thinks I’m being miserable ☹️ but I said my body just tells me to rest I try to lead a relatively normal live working and trying to be normal but it’s hard only people with this condition understand good luck and well done with the swimming 👍
My experience is that this analogy works for me. I deal with depression (seeing a therapist tomorrow) and physically I get up wiped out. I struggle to do small things that require me to think. I will put off paperwork or phone calls that I expect to be simple rmeven when it involves BD.
When I first got diagnosed at 25, granted I had symptoms since 17, it was not a relief.
I felt labeled, and decrepit. I felt trapped in the body of a 67 year old.
things will get easier. I promise. I am a very emotional volatile person. when things are good, theyre good. When they arent- its beyond bleak, and im telling you-
IT WILL GET EASIER.
as my boyfriend tells me, you are not your disease. You will acclimate to your modifications. You will learn about your bodies limits. You will have good days and then bad ones.
You will gain a whole new appreciation. You wont be phased as quickly when flares onset.
I think it's taken me a good 5 years to literally SCUFF off behcets. oh, getting ulcers? COOL. time for more rest and clean eating. I used to get so frustrated and sad because I had to modify and limit my life. But the thing is, you are healing and it takes time.
its one day at a time boop. Make sure to keep saying thank you to your wife and not you're sorry.
I am currently suffering with uveitis in both eyes.
My daughters have again begun questioning what is wrong with me and making me get better soon cards.
I have explained to them that I am not sick or poorly in the usual sense, I just have parts of my body that sometimes act differently.
A lot of those around me are concerned which is natural and I am encouraging them to understand I am not sick, just need to adjust and my kids will adjust with me - it’s natural for them to. I figure as long as I protect them from the extent of it (due to their ages) it will just naturally be part of us as a family.
That makes it easier to deal with rather than just feeling I am letting everyone down or being a burden.
I am always reminded it’s a marathon and not a sprint.
Thank you for writing this post. It really resonated. Daily, the loss of my former self creeps up on me in one way or another. I hope that our journeys in finding ourselves with this condition and coming to terms with new identities happens sooner than later. Wishing you peace.
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