Fatigue and pacing

[Sara_A]

Hi everyone, I have posted before about fatigue but here I am again!!I am seriously struggling with fatigue, exhaustion and also depression and anxiety atm.

I have had my antidepressants increased which will hopefully start helping too and I am also receiving some CBT therapy which has been helpful. But I am really finding coming to terms with pacing and the lack of energy hard even tho this is not a new thing to m, I have had lupus etc for 23 yrs now and have been trying to pace for sometime now!

But with the CBT she has been going over the pacing more and more.

Even walking 5-10 mins down the rd is killing me atm and I could literally lay down there and then which is what I feel like with my fatigue so again this is not a new feeling.

We have 2 dogs that need 40-60 mins a day at least really and I'm obviously finding it very difficult to do this atm but I take them out 6 days out of 7 at least but I'm absolutely dead from it and often need to sleep for the rest of the day.

I'm just really struggling to accept that I can't do what everyone else can do and when we are out walking I've got a stick and other young (ish I'm 44!) women don't.

I just have no get up and go or motivation to do anything. I want to be out doing stuff in the garden but that's not possible as I can't bend down well and if I get on the floor I can't always get up again.

I'm just finding everything so hard atm with my low mood and then the horrendous fatigue and lack of energy

I wish there was a magic pill for the fatigue 😫

[JCZW]

Hi Sara_A I'm so sorry to hear that you are struggling so much.

I was in your shoes last year. I even got to the point that I didn't want to live anymore.

With the help of my gp , mental health nurse ,social prescriber and steps to wellbeing they helped me understand that it was important to change how I do things.

It still hurts alot when I can't do the things that I loved doing but I think I've realised there are things that I can do.

Try to stay strong. I know its hard.

Get all the help that you can to help you through this period.

Lots of hugs xx

[Sara_A in reply to JCZW]

Thanku so much, tbh with you I too have felt so low that I have thought about not wanting to be here anymore. Not to the point of actually thinking of doing anything just that I don't want to carry on like this.I have had some big changes in my life recently having to retire on ill health from a career that was my life and a massive part of who I am at age 43, I now realise was harder to deal with than I ever realised it would be.

I'm very lucky to have been able to access CBT quickly in a matter of weeks thru self referral and they are supporting me and aware that I need ongoing support after the current sessions I'm having and have offered more tailored sessions going forward.

I have a supportive gp too that is aware of all of my issues.

Thanku for ur support it means a lot

[Tiggywoos in reply to Sara_A]

hey lovely . I just wanted to say I can relate to what you are saying😞 . I started cbt a couple of months ago and I do think it helps to “offload” the dark thoughts and feel “safe” because you’re not being judged . I don’t think it’s because we don’t want to be here anymore it’s more the extreme feelings of overwhelmingness if that makes sense ? The thoughts often rear their ugly head when the pain / fatigue is at its worst I’m sure .

I said to the therapist that the thought of finding enough energy to get through the rest of the week terrified and overwhelmed me let alone another 20 years 🤦‍♀️.

I think it made me realise how extreme fatigue and pain stops you living in the moment ( why am I thinking 20 years ahead 😳) . It sounds daft really when I see it written down ( I had even worked out the number of months in 20 years ) 🤦‍♀️ .

I’m sure you can relate, so irrational but “real thoughts “ in that moment .

I’m so sorry I dont have a magic wand 🪄 but I didn’t want you to feel that you were alone with your thoughts . I’m not sure the therapist has touched on compassion yet but it was a real eye opener . I’m sure he will cover that at some point with you .

Big hugs and you take care 😘xx

[Sara_A in reply to Tiggywoos]

Thanku and yes when u say about being so overwhelmed and it being at its worst when the pain and fatigue is at its very worst that is so true.Now being retired so young I sit at home just looking at all the things that need doing and I am so frustrated by it. We have had to have an extension built for a downstairs toilet as I struggle to use the stairs some days as my joints/back and fatigue can be so bad that some days I'd either crawl up the stairs or have to wait till bedtime to go to the loo again and once I'm up there at 7PM for the kids bedtime that's it I stay there. Anyway, the extension needs painting which I'd love to do but there's no way but I look at it every day. My partner luckily is very good and does do a lot to help etc

When the fatigue is so bad I find it hard to breathe even just doing nothing I get really breathless.

I feel that when I don't do much in a day I'm wasting my days and that's something I really hate.

When I started CBT I had to write a personal statement thing and my therapist read it out the other day on my 4th session and I cried, I was like that's MY life! That is me, it sounded so bleak and awful and hearing someone saying it was difficult to hear.

[Tiggywoos in reply to Sara_A]

you’ve hit a nerve about wasting the days …. I think it’s a case of picking something that doesn’t exhaust but yet feels like somethings been accomplished . I know how hard that is when you’ve always been so active .

I’m no therapist but I think you are probably really really hard on yourself 😔… you should feel proud of yourself for continuing with the therapy and even trying to walk the dogs . I hate the vicious cycle of no activity , low mood , guilt . (Me and my friend call it Garry guilt ) . But sometimes we underestimate how inflammation causes fatigue. I used to be able to run for couple hours now I can’t even shower and wash hair at same time . I think I’m learning to adapt with the support from this amazing group and gentle souls like you being brave enough to share .

Stick with CBT and you never know what’s round corner . I pray a new medication might pop up and help with fatigue and pain … (even a tiny bit would be welcome ) xx

[Sara_A in reply to Tiggywoos]

I said to my CBT therapist that I felt that reading (as I love to read and read every night and in the day when I can) was wasting my day as I felt I should be doing something else like housework etc but as she said reading is something that I enjoy and find pleasure in and lose myself in therefore lifts my mood. So it's a very important activity for me to be doing and she encourages me to do more and that its definitely not a waste of time quite the opposite. My kids are very good and help me a lot now they r a bit older, they help get me ready for bed dressed and undressed when needed and tasks around the house. They are so kind and caring bless them 😊

[Tiggywoos in reply to Sara_A]

Your kids sound so lovely . Reading is z fantastic way to escape and so good for brain 🙂🙂

[Rosiaz in reply to Tiggywoos]

Thank you for sharing your experiencing the hopeless fatigue that is a result of inflammation from even basic daily activities such as a shower plus washing hair . Adding to this is often , for me , headache , generalised pain and aching , etc.Somehow reading all the responses gives me the courage to be thankful for the good days and not to panic at the fluctuating nature of lupus making a level playing field possible when bad days and patches can create a hopeless desire to die and remove joy in the good which remains.

[Tiggywoos in reply to Rosiaz]

Rosiaz that’s so beautifully worded 😊. Thank you for sharing 😘

[Tiggywoos in reply to Sara_A]

jeeze and you’ve got kids to look after . You’re practically superwoman 😊

[PMRpro]

It is a part of all autoimmune illness and here is a post I wrote about it years ago on another forum - I have also posted it here but this link is easier for me to find:

healthunlocked.com/pmrgcauk......

This is a link to another thread from my home forum you might find interesting too

healthunlocked.com/pmrgcauk...

And now you have posted, look at the list of Related Posts - at the side of the page on a computer and at the bottom on a phone - where you will find loads of thoughts about fatigue and managing it.

There are kneeling aids that also work as a seat to use in the garden - on my home forum the fatigue is compounded bu the fact the worst effect of our illness is expressed in muscles so we can't do long on any one activity at a time. Sometimes the trick is to adapt what you are doing to a way you can cope with. And sometimes it is paying someone to do the donkey work while you do the brainwork!

[Wolf_1]

Hi Sara_A

I to have suffered for 25 years with SLE. I also have fibromyalgia. My ex partner and I split up last October which was a massive blow to my mental health and I too are on extra does of anti depressants. Why I mentioned about my split is all down to the fatigue than anything else. Obviously there’s more to my split but the main reasons were I worked for 14 years after diagnosis and then when it got to the point of where I was struggling to even get my body to move on a morning then when I got to work the brain fog had me double checking everything and I ended up going quite slow. I was lucky I worked for my brother who obviously helped me very much with my condition but eventually it got the better of me and I had to leave. My partner at the time was working three jobs mainly for money for herself and she also enjoyed working but when she was getting home and I had not hoovered or washed the dishes and sometimes the tea wasn’t cooked, I think although she knew a lot about my condition, to come in from work and I’m in bed at 5:30pm and never had the energy to take her out or even just a drive to the local beach, I think like everyone else looking at you they genuinely start to think you are just totally lazy but you’re not you’re just absolutely exhausted inside. She was my soulmate and we both went through a lot together which included getting TTP and receiving plasma exchanges and given a 3% chance of living, pleurisy that put me in hospital too many times to come, double pneumonia which again I nearly died, total kidney failure on my 40th birthday which led to dialysis and last but not least a kidney transplant, all this with my mood swings and deep depression yet she stuck by me and for that I will always be grateful. But the damn fatigue is so horrendous I did have thoughts of committing suicide and the only reason I didn’t was because my family would not receive anything from my insurance if suicide is committed. And I probably was that exhausted I probably would not be able to take all my sleeping pills due to the total lack of movement due to the fatigue ha ha. So Sara_A I understand everything that you are going through and I sympathise with you more than you can know. This so called invisible disease has always left me with nothing over all this time. I too have a dog and I try every morning if I can to take him for a walk whether it is a good walk or just a tiny walk. I mainly do it so my legs get some exercise other than lifting them up into bed and lifting them down if I want to get up! So all we can do Sara_A is plod on and keep taking the medication and hope that a cure may be found. Hope keeps me going and I just hope tomorrow is a good day that’s all I can ask for! I wish you good health and hope your fatigue levels go right down and you can get more good days then bad!

All the kindness in the world, be well, stay strong and take care of yourself,

Kind wishes,

Wolf_1 🐺🦋😴💤

[Butt3rf1y]

I feel you have too many responsibilities, clear your day so you get to choose when and what you need. Prioritize your needs before others if possible. Save all your energy and strength for yourself.

[Sara_A in reply to Butt3rf1y]

Tbh I often don't have anything to do in a day but I still get so exhausted just doing a bit of washing or ironing or cleaning literally a small amount or hoovering for like 3-5mins. I just wake up nervous and anxious even tho I have nothing to be either about as I have nothing to do.

I am lucky as I have little financial responsibility as my partner covers everything we own our own home and my parents are only 30 mins away.

We have 2 young children that now at 7 and 10 yrs are able to do more for themselves, I have massively struggled over the yrs while they were small it has been horrific at times with fatigue and a baby and toddler 😱 but a family is all I've ever wanted and had I not had lupus etc would have loved to have had more children or fostered or adopted.

[Cathyan]

Sara, I’m so sorry for what you’re going through. Been there, and still struggling (22 years now) Are you on adequate treatment? Can you get help with some dog walking?

I also had to retire from a professional vocational role and miss that part of me. I’m now part of a writing community and about to get an agent for a novel. Cognitively it’s been a challenge, with my memory issues, but it’s filled part of the hole.

Once I switched to Methotrexate 5 years ago the fatigue improved a bit . I find walking the dog exhausts me, but makes me do something active but I use a dog walker regularly to give me a day off- which frees up energy to have an outing or go shopping. And my husband will walk her some days if he’s not working or going for a run.

There’s an organisation where people can “borrow “ your dogs for a walk that someone suggested to me on here. Forgotten the name.

Hope you can get the support and help you need. Take care.

[Sara_A in reply to Cathyan]

I am on mtx injections 25mgs, 15mgs daily prednisolone and 400mgs hydroxychloroquine but yes I am going to ask my rheumatologist st my appt in May about looking at adding a 2nd immunosuppressant maybe leflunomide. I have tried many others but had issues with them!! I have started volunteering at school as I've always worked with children (I was a paediatric nurse and then my last job was a practice nurse working with addicts and the homeless mainly) so I now go into my daughter's class on a fti afternoon for 3 hrs to help listen to them read or do any little jobs or work with the kids etc

I have also joined the school fundraising committee so I help run and organise events such as discos, Christmas fairs etc but still at a limited capacity and my own speed.

The teacher and school are great and fully aware of my capabilities and if I can't go in that wk it's fine but I look forward to it.

I got retired on tier 2 so I cannot do any other job or paid work as there's just nothing else I could do. It's so hard to come to terms with I like to be doing something so now I'm not it's hard. I feel like I'm not anyone anymore, I've lost my identity. I don't feel like I am anybody now.

[Cathyan in reply to Sara_A]

I’m so sorry you’re feeling that loss of identity, Sara_A. Sounds like a good volunteer setup you’ve got going, especially with the flexibility.

Actually, you can work on Tier 2, earning up to the National Insurance kick in level of £12,570, last time I checked! (I’m on Tier 2) I’ve been worrying about this if I got an advance for my novel but it would be unlikely to exceed that amount. Obviously you’ve been declared unable to work in a similar role to your nursing career and hours but maybe something will come up that is manageable that you could try in the future?

[Cathyan in reply to Cathyan]

By the way, I only really had time or energy to tackle writing once the children started getting older, and them leaving for Uni made a huge difference to energy levels for myself. Hope treatment review find something to help 🤞❤️

[Sara_A in reply to Cathyan]

Hmmm I'm a bit confused as to the tiers now but I know that I've been fully medically retired from nursing and any other type of work too??

[Cathyan in reply to Sara_A]

The wording is something to do with “regular” and “like duration” to the nhs job, which I interpret to mean irregular work with fewer hours would be okay. Found this.

Screen shot of nhs ill health tier 2 regulations

[Cathyan in reply to Cathyan]

In fact I would interpret this to allow regular hours so long as it’s less than the former job. Anyone else think this?

[Sara_A in reply to Cathyan]

Well I worked 12 hrs a wk that's what I'd got down to over the yrs, I never actually remember working full time 🤔 actually maybe in my early 20's I may have done 37.5hrs a wk for a short time but remember collapsing on a couple of occasions and that's when my days with occupational health started 😂Tbh there's no way i could hold any kind of job down now I'm just not reliable enough I can't guarantee that I'm going to be well enough day to day and I absolutely hated letting people down in my previous job role

[Cathyan in reply to Sara_A]

Aww, I'm so sorry, Sara. Well, now you at least know about it so you can bear it in mind if anything changes.

[SLS2103]

Wow Sara, not only do I send you much love and strength, but this could have been written by me. I am 48 and considering retirement due to ill health.

I'm so sorry that this is happening to you. But am sending you strength across the atmosphere!

Sarah

[dg70]

Seeing your age it may be you have peri menopause kicking in. Looking back I started peri menopause in my early forties. I didn't get help until actual menopause in my early fifties. I wish I'd gone so much sooner and got help. Every symptom I had went into overdrive once I hit my early forties and I'm sure it was the beginning of the menopause that did it. It was all my symptoms going into overdrive that got me diagnosed after so many years of fatigue etc.. It may be worth seeing your GP about peri menopause and maybe starting hormone replacement if you can. I have oestrogen pessaries, progesterone capsule and hrt gel. It doesn't help with fatigue particularly but it really helps with mood and flushes and sleep. It may be you need to consult with any specialists to see if hrt is ok for you. I had two consultants and gp say yes, one consultant say no. I decided to try it and am glad I did and wish I'd started it years ago. Anyway be aware that dark moods etc.. can come from you hormones which are beginning to go haywire. Small things that you used to handle can become massive issues. Now my hormones are more balanced I can cope with the fatigue and pain etc.. so much better. I still have my bad days but they're easier to deal with. Sometimes I just have a good cry and then its out of my system. I'm 53 and feel like 73 most of the time, I can relate to your feeling young in old shoes. My Lupus group is so supportive too and just meeting and talking to others can really be a great support. Just be aware there may be things you can do and it's not hopeless. Take care.

[marypw]

Hi Sara,

I’m 69 and feel exactly the same. Even doing an easy yoga class via Zoom can completely wipe me out for 2/3 days afterwards. Whereas friends of mine the same age go skiing, play tennis and look after their grandchildren. My husband had a triple bypass and surgery for a ruptured abdominal aortic aneurysm, when he nearly died, but now runs around playing golf and walking Hadrian’s wall. And it really feels like life is unfair.

The total lack of energy, plus all the aches and pains are soul-destroying. I just keep hoping that all the research now being done into long Covid, which often sounds very similar to lupus, will actually benefit us in some way. Sometimes leaning on good friends can help.

Sending you love and good wishes xx

[Sara_A in reply to marypw]

Well just having a shower or a bath can wipe me out and I need to lie down or have a sleep afterwards! Taking the dogs out for a 30 min walk which I do and am constantly walking thinking I need to just lay on the floor right now 😫 I'll often need a sleep after walking the dogs or being out for a couple of hrs with a friend for coffee or something.I even struggle to drive sometimes and have had to pull over b4 for my partner to take over as I'm just too fatigued to do it.

I've had covid twice not bad just mild

I have got lupus and antiphospholipid syndrome and inflammatory arthritis

[marypw]

I try to think to myself ‘let whatever you’ve done today be enough’, but it’s hard when you’ve been used to rushing around. Xx