To ask if this is normal?

[InThePurpleHaze]

DH is 37 and has ulcerative colitis and rheumatoid arthritis. Both very well controlled and people are really shocked when they realise he has these illnesses. He doesn't have full mobility as in he can't run, limps a bit sometimes when walking and has to watch his diet but otherwise he is very fortunate. Anyway, the issue is, he sleeps so much. For example, he goes to bed at 9.30PM and still sleeping at 9AM this morning. He constantly feels tired and can't manage full days out which is hard with a young family. Does work but not super long hours and from home.
Just wondered if this sounds familiar or normal to anyone with these illnesses?

I'd say it's normal. My son, 12, has Crohn's and is always fatigued and sleeps a lot, struggles to wake every day. Even though well controlled, their bodies are constantly fighting the disease and associated inflammation. Malabsorbtion and anaemia are also common factors which will cause chronic fatigue.

I guess it's really tough as we can't do a lot as a family despite him being well in himself a lot of the time

Probably well in himself most of the time because of the sleep and eating healthy. Sounds rough having those two conditions in tandem.

Yes, it sounds normal to me. I have ulcerative colitis, sleep a solid eight hours every night, am tired within a couple of hours of waking and need to sleep for a couple of hours every afternoon. If I do go out for a full day, or even have a very active half day, then I am too exhausted to do anything the next day.

He has a normal life apart apart the fatigue though so not too awful on him. He is lucky as many have much worse symptoms and no quality of life.

I have Crohn's it seems a lot of sleep to me. Does he have B12 injections?

Yes, it's exhausting, debilitating and the tiredness is awful. I always felt as though all the energy had been sucked out of me. I have a j-pouch now. It transformed my life and I have so much energy. I wish I had got rid of the wretched colon years before!

I have UC and as a PP said, your body's immune system is working overtime so it's tiring for every part of your system. It's also more difficult to absorb nutrients from food with UC and this gives me fatigue as does the associated anaemia from bleeding and not absorbing iron. He must need the sleep, it's probably what's keeping him healthy

Got to say op, you sound very dismissive of him and the replies. He’s managing well because of the sleep etc. What do you want?

If you and your DH are worried about his sleeping habits, definitely worth getting him checked out to see if it’s just due to the colitis and arthritis or if it’s because of anything else. It wouldn’t do any harm to get him tested just to make sure his fatigue isn’t down to any other conditions or illness

He is not ‘well in himself’ OP, you sound very resentful. Have you researched the symptoms of just one of these conditions to find out where his physical and mental health is at, via the GP, clinical professionals or the websites related to the illnesses?

Side-effects of medication alongside the symptoms of hidden illnesses are the hardest part of trying to explain to a healthy able-bodied person the downside of being chronically ill. Have you read the
papers inside his meds to guage if fatigue can be caused?

You said yourself he walks with a limp, can’t run & has to watch his diet - all mentally straining. Unless you’re in his position, there is no place to assume. A diagnosis and dealing with this change is life-changing.

My DH doesn’t get cross with me when I’m unable to join in with family activities (I have one of the conditions you speak of + another autoimmune one + 3 chronic degenerative debilitating ones)

Over time we’ve learned to adjust our lifestyle to accommodate this new me.

I suspect she wants a little bit more input.

The thing with sleep as I’ve discovered is that the more you have the more you want. I was pregnant during COVID and so wasn’t working from March 2020. I went back for two weeks in September but was signed off as in tri 3. I took all the advice to sleep when I could so I was napping for two to three hours a day and probably sleeping ten hours a night! of course by the time I had my baby in December it was a bit of a shock to the system!

It’s hard not to be resentful in the circumstances OP describes.

I do think a health MOT would work here, establish whether it is illness or being a bit lazy. I wouldn’t assume illness necessarily, my husband can and will sleep fourteen hours a day if allowed.

I will advise he gets his B12 tested.
As I said, his diseases are well managed so shouldn't be this tired. It's hard being a mum with young kids in this situation. I will not apologise for that.

Having a ‘well managed’ chronic disease (two, in your husband’s case) does not mean you have no symptoms, it means you don’t live daily with the worst symptoms. You asked if tiredness is normal, most of us with these conditions have confirmed it’s normal.

It sounds like what you’re really asking for is some sympathy for your workload, which is fair enough, but blaming your husband for having chronic illnesses is nasty.

I don't see any blame in OP's posts.
She is asking if this is a normal side effect of these conditions.
Because the side effect is having a major impact on family life.

I don’t have any of these medical issues and could happily sleep 12 hours a night
Some people just need more sleep than others

I have ulcerative colitis. It is well managed. I am currently in remission but still have fatigue. Take a look at crohnsandcolitis.org.uk and you can read more about fatigue there - an extract below:

Around 7 in 10 people with Crohn’s and Colitis have fatigue during a flare-up. Fatigue is also common when Crohn’s and Colitis is not active (in remission). Around 4 in 10 people have fatigue when their Crohn’s or Colitis is in remission.

Fatigue is very different to being tired or just liking to sleep. It’s not about being lazy and you can’t just power your way past it. It is a very normal part of those conditions I’m afraid.

"lazy"? Do you know anything about these two serious health conditions? I can only assume not based on your ludicrous post.

My DH is disabled, not the same conditions as your husband, when he got his diagnosis I had a 2 year old and a ten day old baby. I think you just have to accept that you do more with the children by yourself and days when he can join in are a bonus. You also have to plan family days considering his conditions so maybe shorter less physical stuff.

It's hard but mine are grown up and I suppose it is just normal for us.

Please read this leaflet about fatigue. It will help you better understand what your husband might be experiencing and might give him some useful tips about how to manage it.

crohnsandcolitis.org.uk/media/0ycputyn/fatigue-ed-3-approved-version-april-2022-no-refs.pdf

….& some of us have multiple chronic illnesses and deal with the symptoms of these and deal with the side effects of the meds and deal with work and our children 🤷🏻‍♀️…and bizarrely I still mange to have empathy for my fit and well husband who supports* me 🤦🏻‍♀️

As I said earlier….

I didn't say my DH does not have empathy for my situation. I was just pointing out that it can be tough on my end as well.

I understand this is a difficult situation for everyone.

Seeing his Dr sounds like a good idea for him. And could you both look at getting some extra help in for you?

Is it possible because his conditions aren't having a lot of external symptoms beyond the fatigue that you're not truly grasping that he has two significant medical conditions?

It almost comes across as you think he's 'having you on' about the amount of sleep he needs. If this is the case, I think you have bigger relationship issues.

Good luck

I have RA and could easily sleep that much. But I have 3 kids so really push myself to get up. My usual routine is 10-6.
Luckily my oh is amazing and I can sleep in longer at the weekend.

www.patientsrising.org/what-is-spoonie/

I'd also suggest looking at the above