Is your cognitive behaviour affected during the f... - LUPUS UK

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Is your cognitive behaviour affected during the fatigue stage ?

Lisalou19
Lisalou19

So I go from an upbeat person, who laughs and smiles and faces the day ahead, to a person that does not reflect the real me.

I sleep, and when I’m awake I just feel like I can’t cope, I feel like I don’t want to live my life like this. I am extremely fatigued at this time of writing, and trying to stay strong by remembering my good healthy self.

Is this illness causing a stage of depression, or does it change the balance in the brain? My own self confuses me and more worryingly I know I will be ok again in a couple of days, until the next time. I can no longer talk to family or friends, they all say the same thing “your be alright in a few days” to a degree this is correct, but when I’m feeling this way them words are no good.

I thought I’d grown up the past few years, but reality is, I haven’t! I can no longer engage in late nights out, having a drink and just being fun, I envy most people around me. And on top of this I’m a single mum to 3 children , who I struggle to give a normal life to. I need to better manage these periods of feeling totally down , but anti depressants don’t work 😔

24 Replies

Hi there

Just to say, be kind to yourself...

I get everything you say but have gone to the extreme of being a complete recluse and hermit as I could no longer play along with the world and saying the "I'm fine" rubbish. I found I was playing a part to suit how others wanted me to be, it was exhausting, so I quit doing it.

I'm 53 and dx nearly 30 years so it's been a long time. So I choose not to engage with the world and smile for others when I feel bad... it's my Eleanor Rigby by the door and it will stay there for as long as I choose! I don't advise doing this as it's really NOT the best idea, it just seems to work for me and my family have accepted that I don't want to be part of a false world pretending to be well so others don't feel bad.

Having gone through every med over the decades, I am now on biologics which I count as a literal lifesaver and life didn't feel worth living a couple years ago. Actually, 6 weeks ago I felt so bad with headaches and didn't think I could carry on.... but here I am.

I don't think I was depressed, I was absolutely lucid but I just didn't want to fight any more... and today, I remember that every.single.day... especially on a not so good day.. because I do now know that it will improve, medications improve, but the frustration of not knowing how long a flare will last or when you will feel better is awful.

I also feel that having the invisibility of Lupus etc is the most disabling part of autoimmune diseases. What people don't see, they don't understand... and kids, well, then you feel useless as a mother. YOU ARE NOT USELESS THOUGH.

HOWEVER, this does change as kids get older and they understand better.

Fatigue is so debilitating. I guess when people see that you can't do things, like unable to walk or lift your arm up or whatever, a physical, visible symptom, then the world is more understanding... but fatigue and mental health aren't visible.

My advice, and how I try to live (though I don't necessarily manage all the time) is to BE KIND TO YOURSELF. When you need to rest, please ask for help from family and friends... when you fall into bed at night and worry about how the heck to get up the next day, practice your breathing, deep breaths, hold them for 4-6 seconds, breath out.

Please don't self punish yourself for being ill... please, please try and let people help you, especially being a single Mom. I was too and my eldest is autistic who sadly, the reasons aren't relevant for here, needed to be in care and my little one was a young carer since the age of 8... he is now 21 and about to go into the health care sector as either an OT or mental health counselllor I believe.

I don't know how old your kids are, but they are exhausting at the best of times and being on own is so difficult. Try to get help from people close to you... I found family wanted to help but then I felt useless that I had to rely on others. it's a viscious circle.

Keep in your mind that the flares will improve, the medications can work once the right regime is found, allow people to help you and please don't feel you have to do what others want. If you don't want to put on a social smile, don't... it can make you feel worse. Please don't do what I have done by cutting off the world as that can be a lonely place for some, it works for me but most of my friends have disappeared by the wayside... not their fault at all, just my self preservation at not having to be someone I'm not.

Talk to your rheumatologist about whether antidepressants could help... I'm not a big fan, but I'm no doctor and I chose a different path. I do believe that talking is the best therapy, however you choose to talk.

I do believe that anyone with a long term chronic illness has to deal with mental health issues... but we aren't all mad or depressed ... we struggle and we find ways to cope.

Keep your family and friends close and even though their words don't help... and can sound infuriating and patronising at times, try to tell yourself that you know there will be an improvement and when you can, even if it's anonymously on a forum, talk girl, talk and people will listen... and people who understand exactly how you are feeling.

Sorry to waffle on, tonight I absolutely am fatigued beyond belief but being an insomniac too, sleep doesn't come easy.

Finally, apols if this has come across negatively, that's not my intention... just want you to know that people here will GET you and hopefully tomorrow other folks can chip in to reassure you.

Always remember, you didn't ask to be ill, you don't choose to be ill, you do the best you can, when you can, and live your life on your terms, without letting your illness define you. The old cliche, you ARE stronger than you think and there a lot of us who have found that out along the way.

Take care girl and best wishes to you. X

Lisalou19
Lisalou19 in reply to Dragonfly4

Thank you for taking the time to write this reply. You’ve touched on so many relevant points.

I think the hardest part for me, is others around me just don’t get the illness. I say fatigue, they say sleep. I say I don’t feel good, they say sleep. Sometimes I just can’t sleep. It would be nice for someone to just sit with me and talk rubbish.

Unfortunately I am very isolated from my friends, and that’s because I always have to cancel arrangements, they don’t understand why.

For me the best way to cope is to process my own thoughts out loudly. I believe hearing myself out loud makes me realise what a mess I am and I need to pick myself up. Only sometimes I have no one to talk too 😔.

Here’s to today being a better day

Xx

HedgeEnd
HedgeEnd in reply to Lisalou19

I hope you have a better day today. It must be hard being a single mum to 3 when you are healthy, but when you are ill it must be very difficult to be upbeat. I definitely have days when I feel low. Normally, I am able to make myself do things with will power. I tell myself it will do me good to take the dogs for a walk so I do, or I will feel better once I get up and go to work (only work 2 days a week during term time). But I've just had a couple of days when I just couldn't make myself do anything as felt so rubbish. My 'mind over matter' outlook totally disappeared as I felt too exhausted to do anything and my normal upbeat self hid itself away. Felt a bit better yesterday and walked the dogs and did a bit of housework, but did have to force myself to do so. What I'm trying to say is, that for those couple of days, my normal self went away and at that point I felt like I would never get back to being me, but at the same time I knew I would, but just couldn't visualize it so I can relate to you.

My husband, who was trying to be helpful, kept telling me to go to bed as that would make me feel better! And one morning I did as I just had to, but what he doesn't get is that it doesn't always work like that. In fact, sometimes laying down makes me hurt more, so even though he is very supportive, he can't understand. I assume it if difficult unless you've been there yourself.

As Dragonfly said, talk on here as much as you need to and agree that we all struggle at times to cope. I find it very helpful to read what people post and have tried to explain to you how I can relate to how you feel.

xx

Lisalou19
Lisalou19 in reply to HedgeEnd

I do walk a lot, since I’ve been suffering muscle/nerve problems , I walk to try and keep myself strong. It’s rare that I physically can not do it, but this weekend I’ve just felt like a complete zombie.

I don’t understand why sometimes I can push myself through it and other times I’m so weak minded I can’t get through anything.

It feels like a complete emotional rollercoaster, and there’s just no consistency to it.

My children don’t understand the zombie state that I am in, and the pain that has also been constant this weekend in my back.

I kind of wish there was a quick pick me up during these bad periods . So frustrating, as that light that’s always at the end of the tunnel completely disappears during these moments. I really don’t like this side of me, it’s just not me at all.

It is reassuring to hear from others, it gives me some clarity that what I am experiencing is normal , and that in turn gives me the strength to think I can do this. I just need to manage it abit better

Xx

HedgeEnd
HedgeEnd in reply to Lisalou19

I don't think you are being weak minded. My view (now I'm feeling more like me again!) is that sometimes our brain steps in to protect our bodies. You say you walk a lot too. Well it is probably very good for us to do so, but sometimes we just need to rest and that is when our brain tells us we can't do it. And yes, it makes us feel low and useless (but we aren't). I too feel I need to walk to try to keep strong as if I don't I will get weaker and find walking, housework, shopping etc even more difficult.

I think you are probably managing very well most of the time and must try not to beat yourself up when you find it difficult to cope. (It's so much easier to tell you that, than it is to tell myself).

I don't think kids do understand. Mine are teenagers now so can mainly look after themselves if they need to which makes my life easier.

I'm really glad that hearing from others has helped a bit.

x

Dragonfly4
Dragonfly4 in reply to Lisalou19

Hi there Lisalou, agreeing with everything Hedgend said too.

Most people think fatigue means simply being tired... but it's so much more than that, it's the "ill" feeling that goes with it, the bit that can't be described, just feeling "ill" and always the unpredictability of Lupus et al.

I have conversations in my head all the time (I know, I sound loopy) but it's the rant that goes on that you know people are sick of hearing about being chronically sick, so you say it to yourself. That's why mediums like here are a good outlet and each and everyone, whatever their illness, does understand what you're saying.

My body will physically shut itself down when I'm fatigued... but the difference now is my kids are grown... and I can totally empathise that with 3 kids you don't have the luxury of taking the time to rest.

I don't know if this will be any help to you but I wrote it a while ago and didn't continue writing but I reckon it could reassure you that the feelings you feel are like others of us. Biologics were my last chance and so far... so goodish....

unleashingthewolfwithin.blo...

Though I will never try and persuade anyone to go down the steroid route as I despise steroids, sometimes a quick spurt of steroids does help, loathed as I am to say it. The steroid depo injection in your bahookie can help some people, the oral steroid will help almost everyone, but it's a tough call to make. (Long term steroid use is definitely not something anyone should do as the side efffects can be as bad). A depo injection can help for a while... sadly though, unless you go into a remission, it's a case of waking each day and doing the best you can and having a positive mind set, which isn't easy to do.

Be kind to yourself and know that there are folks who will listen to you when you need to talk. Here's to a better day for you and wishing you strength and wellness.

ps. You haven't said what meds you are on... some meds work for some people, some don't ... do you have a rheumatologist who is treating you or were you given a diagnosis from blood tests and not medication regime to try?

Pps Really hoping today is a good day for you. x

Lisalou19
Lisalou19 in reply to Dragonfly4

Fatigue is more than tiredness, I find it difficult to sleep when I’m fatigued but if I’m just tired I can sleep , but not for long.

I’m on the road to diagnosis, I’ve battled this for years, I went privately last week to London Bridge hospital, and he seemed to think I have Lupus based on symptoms and physical symptoms at the time.

At the moment I am controlled with high dose steroids. Which help loads.

Only when the fatigue hits, I can’t take tablets as well as I tend to choak a lot, and it’s my daughters who have to help me. Because of this and the pressure it puts on my children and of course the physiological fear of suffocating I don’t take them 😔. I know they will help, it’s a catch 22.

Today I’m like a different person, I’ve laughed with my children , I’ve fallen over in front of the children and still laughed. Yesterday I could not even bare an ounce of noise. I hate how I change so much. I’m such an up beat, strong minded person, that can conquer the world on my own with the kids, but with this illness I just feel like putty.

It’s so difficult to just remind yourself that you will get through it and return to your old self.

Xx

Dragonfly4
Dragonfly4 in reply to Lisalou19

Maybe just talking yesterday into cyberspace gave you a little release of angst which could have helped today. Yep, unpredictability is the worst, sometimes I feel like a fraud as I can be absolutely good one minute and an hour later, rubbish and ill. Even my family find that hard to decipher. Good days always come with payback soon after... I hate it too. Grrrrr. Enjoy your good moments Lisalou.

I found being on long term steroids (6 years high dose - in the USA and back in the UK) that they affected me horribly in the head... probably the only time I could have considered being depressed with massive weight gain etc.... they are a nemesis to me but I do have to bite the bullet at times and take them short term. If you are on a high dose, perhaps ask about calcium supplements and also if you get a dx then ask for a bone scan to check if the steroids have affected the bone density.

Have a lovely evening with your kids and best wishes for tomorrow.

Lisalou19
Lisalou19 in reply to Dragonfly4

I’m thinking of joining slimming world , as I’m constantly hungry.

Talking things through have really helped, and made me realise this is possibly a coping method I should adapt too. It sounds extreme but I’m sure some place like the Samaritans could help 😏

I’ve stayed single as I just don’t think someone could handle my ups and downs , which of course leaves a gap in your life.

I just hope for more better days than bad. I really do appreciate both of you for taking the time out to respond to me . This site is like my little diary and I only come across by chance 😊 x

Dragonfly4
Dragonfly4 in reply to Lisalou19

Your hunger pangs are caused by the steroids... they have a massive effect on your blood sugars. When pregnant I had to inject insulin 4 x day due to gestational diabetes caused by steroids. (They did save my life though and my child). Could you ask your GP, or whoever is prescribing the steroids, to do your blood sugars. Also, the GP should be doing regular bloods on you with high dose steroids. If they are prescribing because your CRP / PV or in some cases GPS sill do ESRs are high, they must refer you to a rheumatologist. Steroids change the blood sugars dramatically and need to be tapered very slowly as they affect your adrenal gland. All in all, though they work for any kind of "itis", I.e. any kind of inflammation, long term use is a whole world of hurt for bones, blood sugars, eye health and mental health, amongst a few. They caused my cataract a few years ago. They screwed my head so badly. Cushing's syndrome.

I'm not meaning to worry you with this as I know they are a necessary evil, but your prescriber must regularly check bloods, urine, blood pressure. Please try and push them to do this. There are many meds to help with arthritis, Lupus, fibromyalgia etc which can be steroid sparing.

This is an American link but relevant none the less for the use of corticosteroids

mayoclinic.org/steroids/art...

Elevated pressure in the eyes (glaucoma)

Fluid retention, causing swelling in your lower legs

High blood pressure

Problems with mood, memory, behavior and other psychological effects

Weight gain, with fat deposits in your abdomen, face and the back of your neck

When taking oral corticosteroids longer term, you may experience:

Clouding of the lens in one or both eyes (cataracts)

High blood sugar, which can trigger or worsen diabetes

Increased risk of infections

Thinning bones (osteoporosis) and fractures

Suppressed adrenal gland hormone production

Thin skin, bruising and slower wound healing

On an aside, I too don't have someone living in my life permanently... my partner lives in a different country and comes home every 6 weeks for one week. He supports me daily but from a distance even if it feels as though he is in the next room. After divorce, I dated but NOT.ONE.MAN (out of 3) could cope with illness. My chap, I believe, can but he doesn't live here so I guess we may never know. I'm hugely independent, stubborn, pig-headed and do not like to ask for help ... it's important to keep your independence, but please don't be as stubborn as I am... do try and keep your family and friends close and ask for help when needed with the kids.

(I don't practice what I preach, just I'd hate for you to feel alone)

Signing off now, chap home tomorrow, lets hope I can keep well for a week and hope your days keep improving.

Oh, finally, one of my friends (all 3 of them) went to slimming world and lost 3.5 stone. She is diabetic and has numerous medical problems, but she found an amazing social circle and it changed her life. She goes every week and it has transformed her.

Blessings to you. Wishing you good days.

Lisalou19
Lisalou19 in reply to Dragonfly4

You are so lovely , thank you xx

I hope you stay fit and well fit your partner , you deserve good days 😘x

Steroids make me so hungry and we all nod our heads . Reading all these posts make you realise how similar we are. Most of us have lots of stress as well.british diets also lack pure foods .too many caught in spiral . Doing way more than is good for us years ago mums just ran homes and looked after children more than enough!!!! No wonder we get ill ?

As lupus is an autoimmune disorder, it has its ups & downs.

Lupus can affect any organ in the body, including the brain.

I was Dx’ed in 1986, and I now test seronegative, so my doctors don’t believe I’ve ever had lupus (though I still have the symptoms. You should see how swollen my face & the rash on my arm get when I’m out in the sun for a few hours!)

The cognitive problems and the depression can come from the exhaustion, the realisation that it’s a lifetime disorder, lack of physical &/or emotional support, or a combination of all these. For me, it usually comes on with all of them hitting me at once, especially after seeing a doctor.

Those idiots are enough to depress the most manic person. 😩😩🤔😡😡😡

Lisalou19
Lisalou19 in reply to Lakewolf

For me this is 14 years of hell. The past 8 months have been worse than ever. I’ve been to every bloody doctor under the sun. Referred for mental health assessment, which come back fine but has damaged me physiologically.

I can totally relate to calling them “idiots”

I recently waited 7 months for a specialist appointment, only for the consultant to not listen to a single word I was trying to say 😡

It is at these times I definitely withdraw as no one wants to understand what you are going through.

I see a different doctor last week privately, his the first doctor who really recognises I need help and explained reasoning to why no one has been able to diagnose it.

I just crave respite x

Lakewolf
Lakewolf in reply to Lisalou19

I know the feeling.

I have a maxim:

If I know more than the doctor I’m seeing, and they won’t allow me to educate them, then they may be an MD, but they certainly ARE NOT a doctor. I may or may not walk out (& may or may not pay the bill), depending on how much of an @hole the doctor is.

I totally understand...when I'm good during the day I feel like ME...then the fatigue hits me and I do not think I can live like this anymore...this is daily... I get very quiet, my grandchildren bother me..I just want to be alone and quiet...then once again I come out of it ready to be ME again...Xx

This is exactly how it is. I can’t bare the sound of my own children 😢

If I took this to a doctor they would right it off as depression. I suffered depression badly when my son was born. Every day there was never a ME, there was a person who slept and cried at every waking moment. This feeling is totally different, it’s almost like a zombie state of mind. I doubt my own mental stability and that is why I post here. To get clarity that this is all too real for many xx

I get it...depression is (for me) Nothing like Lupus Fatigue....No one can understand unless they feel it ...or they are close enough to see this is different..and hopefully have compassion..... xo

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Lisalou19,

Have you spoken to your family or friends about how you feel when they respond to you being unwell? Communicating how you feel about their response may change the way they respond to you in the future if a similar situation is to happen again. We published a blog article on lupus and relationships which you may find useful to read: lupusuk.org.uk/lupus-and-re...

Would you like someone to speak to? We have trained Contacts who you can speak to over the telephone. Please contact me at Chanpreet@lupusuk.org.uk if you would like someone to speak to.

It is possible that some treatments for lupus such as prednisolone (steroids) could trigger or exacerbate depression and/or anxiety. We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...

If you haven't already read our blog article on 'managing fatigue', you can read it here lupusuk.org.uk/managing-fat...

Wishing you all the best.

Thank you for posting all this information.

I’m really trying to implement strategies that will work to help me cope better.

I’m such a strong individual, I hate feeling weak

X

Hey Lisalou, how're doing?

Lisalou19
Lisalou19 in reply to Dragonfly4

Hello Dragonfly4,

Thank you for asking . I’m still here 😅.

Just got through another bout of rashes and more worringly for the 3rd month in a row, struggling to get my words out. I try not to think about it too much, although I’m fully aware it is really happening.

I started slimming world too, as the diets literally removes sugar from your diet. Not seeing much change yet but I’m pretty sure sugar is a demon to my immune system.

My only friend I really have, is gravely I’ll in hospital at the moment 😢. Funny his pain has kept me off of mine.

How are you doing?

Thank you for asking once again

X

Dragonfly4
Dragonfly4 in reply to Lisalou19

Good to know you're hanging in there and I can very much relate to not getting words out... it drives my son mad as he stands there and says "words Mom"... and for the life of me I can't find them. Sometimes, even trying to have a coherent conversation is somewhat of a strain as I know what I want to say, but simply can't get it out. Feel like a complete numpty at times.

Had a good week when partner was home but had to sleep a couple of afternoons as we tend to try and get as much done as possible as he's only back one week in 6 so this time we reroofed two sheds... then payback happens but that's the usual scenario. The last 3 times he was home I had surgery in March, biologics in May and then a serious headache problem in June which rendered me in tears for 6 of 7 days and wondering again if life was worth it... but then you hitch up yer britches and get on with it. My pity party was not serving me well... so this time was a massive bonus in that I could actually DO stuff and enjoy our time together without being a blithering wreck.

It will be hard for you on steroids to keep upbeat with removing all sugars as the cravings are awful... doable, but hard work. I'm happy though you are going to slimming world as it can be an excellent social event too and I don't think I'd be too wrong in saying there are probably folk there battling with illness and gone through comfort eating. Certainly, my poorly friend has gained a whole new social circle and enjoys their company immensely... so good on you and be very proud of yourself <thumbs up girl>.

I'm about to go through a rather rough patch as my Mom has just been dx with colorectal cancer and we're on an emotional rollercoaster with surgery on Monday and the possibility that due to her medical problems (she has PMR, is on steroids amongst other things incl a triple bypass in 2005 and chronic diverticulitis disease) that things may not go to plan as she is very high risk. Seeing surgeon again tomorrow to see whether he thinks she can get through surgery without stroking out or heart attack and she's doing a DNR so that's really a rollercoaster that doesn't stop in my head. Damn... so I'm going to be going to hospital each day (3hr round trip) and am likely to go into a flare. Keeping it together at the moment. One.day.at.a.time.

I think when we talk to people on forums or other such media anonymously and can spill out feelings, I know for me, that trying to help others takes my mind off my stuff going on, much like you're doing with your friend. Keep some reserves of strength for you though ... as the saying goes, you can't help others unless you're taking care of yourself... who knows who said it, but it's true.

You aren't weak... you truly are stronger than you think even though that's a cliche, but you do keep going and with kids and illness and and and, you are still keeping yourself together so again, well done you and I hope your friend recovers speedily.

Take good care and there's good folk here to help you through the bad times. Virtual hug your way xx. Will keep checking in on you if that's OK but no pressure to talk unless you wish to.

Lisalou19
Lisalou19 in reply to Dragonfly4

Such a beautiful reply.

I no longer use social networks, this site is about as social as I get 😂 but it’s so good for me. Mentally chatting on here makes me realise so much is real and it’s not in my head.

Do you know what causes the speech problem ? At first I thought I was having a stroke, but I’ve noticed it comes along when I have other symptoms and then disappear again 😏. Like I say I try not to over think this one as it would worry the life out of me.

I’m only now starting to learn that even though I am having a good day, I must not over do it as it can knock me sue wards for 3-4 days after.

Sorry to learn your mum is unwell, not sure how you cope with that on top of everything else. You sound rather like me though and go in to auto pilot!!! Sometimes I wonder if this side of me is expected from others or if it is just the way I am made.

I find my family are the worse people in trying to understand how ill I feel at times. When my mum says to me, you look really well, I get so annoyed at her, but I am always the first person she will ask help from and naturally I do it.

The biggest key to my coping is keeping busy, I give myself very little thinking space. Not sure I could do the long hospital journeys you are about to take on. You must be superwoman! I could not commit to that. But then again we somehow just DO IT.

I hope things goes well .

I do like chatting on here, this was a good find. Big thank you’s to Paul Howard xx

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