how do you cope if you have a life long medical condition?
Fantail · 16/06/2017 20:58
Just that really. I was diagnosed a year ago with T1 diabetes and hypoactive thyroid. Other medical investigations revealed some minor kidney damage (potentially caused by my pre-eclampsia while pregnant with my daughter) and I also had a cancer scare and operation to remove a tumour from my bladder. Before that after hours visit I hadn't visited the doctor in about 3 years, and not sick with colds/flu either. So I was kind of side-swiped.
Thankfully all of these are now resolved or well controlled and I have great doctors.
But that doesn't take away that I have to deal with it every day for the rest of my life. 90% of the time I think I do pretty well. But then I have a little emotional wobble.
So if you have something similar, how do you cope with the wobbles? When you have a bad day?
Birdsbeesandtrees · 16/06/2017 21:01
I'm not sure if it counts but I have depression as a life long condition. I've had it since childhood and expect to have it until the day I die.
I'm very lucky it's well controlled but I don't deny sometimes it's very hard knowing there is no real end in sight for me and that I just have to make do.
Ofcourse the medication I take restricts me in some ways but it's saved my life so there's that.
I personally remember meeting other children like me at groups and the like and I try and hold on to the fact that not all of them got to have a future and a life in the way I do and I guess I kind of feel I owe it to them to keep trying when I've been so lucky and they weren't.
ArchieStar · 16/06/2017 21:08
I take each day as it comes. I always have 2 plans in my head for each day: good day plan and bad day plan. Good day plan is to do certain activities with DD, playground trip, sensory activities, learning games, etc. Bad day plan is to survive... rest in front of the telly, quick walk with the dogs then back into pjs, pain killers, toys out that DD will play with for hours guaranteed and count down hours til someone can come take over and I can rest. I have a very good support network luckily and DH/others knows if household stuff doesn't get done one day it will get done eventually, but they have all seen me at my worse and now understand my triggers and when I'm at my limits.
I wish you all the best OP, it can get so so so hard at times, you really do have to make the most of the good days and rest on the bad. I have come to know what I am capable of with and without support and also plan those accordingly.
E.g. Walking dogs on local park with DD while she goes and attempts to climb trees/investigate bugs/whatever I can do. Big walks in country parks where there's a playground and ice cream etc I can't on my own.
I would love to be able to live my life as I used to pre-illness, but I can't. Mentally it's been so frustrating as my logic was "I could do it before, why can't I do it now?!" So it was hard accepting my new limits.
If you ever want to rant or talk about living the spoonie life (google if you haven't heard this before) by all means send me a message.
All the best!
CoperCabana · 16/06/2017 21:16
I have a range of complexities and, am similar, in that most of the time I am fine, but I do have wobbles. The thing that I find hard is that because I am fine most of the time, people expect me to be fine all of the time. I am seen as 'strong' and 'brave' and a bit hard faced, so I find it really hard to express my wobbles! I have been through a particularly tough patch and have found too much solace in wine and comfort food, so I am trying to address that! I am lucky though. Whilst I am confronted by my condition daily, in terms of physical appearance, and whilst I have had to face my mortality on more than once occasion, I am actually pretty well, hold down a senior role, make a sometimes hopeless attempt at being a mum, and all that takes my mind off it. But I also think all that makes everyone feel I am ok all of the time, hence it just feels so hard to shout when I am not!
Sorry for the ramble. Not sure what my advice is. Maybe show your wobbles more (so to speak!)
cailyaclara · 16/06/2017 21:26
I'm not sure yet as I've only been diagnosed with my condition for a few months. I'm kind of just trying to carry on relatively normally but the pain/fatigue can make things very tricky indeed. The limitations I'm now finding that I have are incredibly frustrating but I'm sure I'll learn how to adapt...
Thekitten · 16/06/2017 21:39
I carry a blood disorder which results in chronic anaemia. I can (sort of) control it with iron tablets, I say sort of because it doesn't always make a difference. So most of the day I deal with dizzy spells, chest pains, little energy, lethargy, and if it's really bad then shortness of breath. Some days I'm ok though. It's a right royal pain, and because I don't always get on with iron supplements, I try and control it by diet instead. It's harder, and I'm not always successful.
So how do I cope? I rest when I need to, make sure enough of the right people are aware in case I'm having a bad day, I eat as much of the right foods as I can when I can, I try not to overdo things.
It's hard, no lie, and I wobble cause of the exhaustion, but it's ok to do so :) don't beat yourself up about it, just do the best you can. Find something to keep you motivated.
Nectarines · 16/06/2017 21:40
I've had type 1 for years now and, although I don't have all of the other ailments you've described, I did suffer a few complications from going undiagnosed for a while (kidneys mainly).
Honestly, diabetes is annoying and it feels relentless at times because there's no let up, but managing it does become easier. It's second nature now to count carbs, test, inject etc and I don't give it a lot of thought any more.
Fantail · 16/06/2017 21:41
This all helps thank you.
I will google spoonies @ArchieStar!
@Birdsbeesandtrees depression definitely does count. I've been particularly bad at looking after my mental health.@Copercabana I know what you mean about being fine most of the time, so people find it hard to understand when you are not.
It is just me and my daughter as my marriage ended almost 2 years ago. She has been great and has taken it all in her stride. I've answered the questions she has needed asking. She is genuinely curious about medical stuff anyway - doctor in the making!
What did not help was my ex-MIL saying "well I guess you would have been dead 50 years ago" loudly in front of her 🤔😡
Work are great. I go to medical appointments when I need to and there's no big deal, but some people still struggle. Like yesterday when I desperately needed to eat and they wanted me to come and talk to someone and were being rather insistent, when I said "I have to eat".
teaandakitkat · 16/06/2017 21:47
I have arthritis. I mainly don't think about it, it's always sore but that's just my normal now.
Every now and again though I get majorly annoyed at having it and I look at other people who don't have this to worry about and feel insanely jealous. Then I pick myself up and carry on. What else can you do? Diabetes must be even harder, it impacts your life much more x
MrsJayy · 16/06/2017 21:55
I have a birth defect so life long some days weeks years have been pain free and hunky dory others have justt been shite. You really do need to accept the good along with the bad acknowledge the wobble it is ok you don't have to "be brave" and then once the wobble is over you carry on with your life
Floridasunset · 16/06/2017 21:58
It is amazing what you get used to as time goes by. I was diagnosed with a life long condition in my early twenties and came out of hospital on almost twenty tablets a day. It took years to stabilise and get the right dose but it is well controlled at the moment. Although this can change at any time and I would almost have to start again.
It's part of my life now. In my twenties I was embarrassed by it but now I'm proud that I'm living my life to the best I can.
Not sure what I am trying to say but maybe you cope by accepting it as your new life or part of your life and going from there
ZigZagIntoTheBlue · 16/06/2017 22:06
I have a chronic and incurable disease, for which I'm on permanent medication. I have it managed fairly well but it does knock me for six when it gets suddenly worse and I have to think about it again. Sometimes I have an attack of the 'why me's' but generally speaking I'm not prone to depression and try to take a 'at least I'm not dead' attitude. Allow yourself to grieve for the old normal, then try to accept the new. Online forums can be a huge source of help too though there will be lots of people trotting out worst case scenarios to everything so take it all with a pinch of salt!
llangennith · 16/06/2017 22:19
I've had lymphoedema following breast cancer treatment 16 years ago. For the first 12 years it was almost ignorable. The last few years it affects my everyday life and most of the time I handle it but when my arm is really bad I indulge in a bit of self pity. Mostly when I'm tired. Then I just get on with life. What else can you do? What I'd really like is for loved ones to understand that it actually does impact on my everyday life.
lucyandpoppy123 · 16/06/2017 22:34
I'm 23 have a 2 year old DD at Uni and have had Crohn's disease for the last 10 years. I have been having chemo for it every 6 - 8 weeks since 2009.
How do I cope? Well it's a lot easier when it is well controlled with medication then I can sort of forget about it it is always in the back of your head but I just try and get on with life as normal and people are always surprised when they find out how ill I am/have been.
When my crohns is flaring it brings everything to the forefront and affect my daily life massively with pain, inability to eat, going to the toilet 20+ times a day and generally feeling rubbish and knackered. How I manage then is by resting (often don't have much choice it's rather difficult to go out when you need to be within 30 seconds of a toilet at all times), accepting my limits, trying I find joy in small things, connecting with other people who are ill on social media (YouTube good and more recently FB groups are a good way of connecting with people that 'get it'), if I'm able to then doing things that give me a boost be that getting my hair done, having a face mask, relaxing in the sun with a magazine or horse riding
BobbinThreadbare123 · 16/06/2017 22:35
You just get on with it. I don't let it rule me, it is part of me but it will not ever be allowed to be in charge. I keep as fit as I can manage, keep my diet as good as I can and if I need to take it easy, I do it. I've lived with this without support for a long time and now I have support, which I won't ever take for granted. I've lost friends and my first husband divorced me because of it, in part. But he is a turd and my DH is amazing. I am lucky with my work too. I have worked for a few dickheads who didn't know the law (Equalities Act, anyone?) and I'm glad to be working for someone decent now.
lucyandpoppy123 · 16/06/2017 22:40
- should read I have a 2 year old DD and I'm at Uni not that she is lol!
Also accepting help where offered or available for example if you can afford a cleaner or help then do it, if work offer assistance like reducing hours of working partially from
home then take it! ( or in my case Uni which offer extended deadlines and various other help).
Research your illness ex entirely and connect with other people that have it, knowledge is power and helps you to make informed decisions on treatment etc.
Some people find that changing their diet helps their symptoms as well as giving them a sense of control over their own bodies doesn't work for everyone but worth a go trying to be in tune with your body and at the very least avoiding foods that you know to make symptoms worse
Armychef30 · 16/06/2017 22:42
Last may age 35 I had a heart attack in the middle of the night before that I'd been perfectly healthy then over the next few hours I nearly died then had a stented then was told my other artery was also more than half blocked I left hospital with a ton of painkillers told they were to be taken for a year now to be taken for life due to the other blockage I have since had a marriage breakdown and suffered further health problems and now am awaiting an operation to remove my gall bladder I am in extreme pain quite a lot have 4 children and spend most days either in bed just surviving or in hospital it's a shit quality of life and I'm really hoping it gets better
Ollivander84 · 16/06/2017 22:42
99% of the time get on with it
1% cry and eat chocolate and whine
Autoimmune neutropenia so I inject myself with a drug that has shite side effects once a week (that's when I moan because I have a headache, flu/fever shakes and bone pain)
Cauda equina but had a discectomy for that
Chronic cholinergic urticaria - I come out in hives if I get stressed or hot or exercise
Depression and PTSD
Itscurtainsforyou · 16/06/2017 22:47
I try to get into a proper routine (which includes taking tablets/injections at particular times) so it's as second nature as having breakfast.
I try to be organised (make sure I never run too low on meds etc) and keep back up meds with me in the case of getting stuck somewhere with work.
In terms of eating at particular times, I try to leave my desk so I'm clearly having non-work time/space.
It was a pain in the arse at first, now it's just part of life.
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