Sorry in advance for what will seem like self pity and rambling but I don't know who else to talk to.
As you'll see from my previous posts, I'm in the investigative stage to get a diagnosis with Lupus, Sjorgens and RA being thrown into the mix.
I also have a confirmed over active thyroid with mixed disease (I've to find out what this means next week). I'm under Rhuemy, Endocrinology and Dermatology.
I seem to be going through a very bad patch pain wise. It's horrendous and the tramadol isn't touching it. But a new development is the worst fatigue I've ever experienced.
I spent the whole of last Saturday sleeping and was unable to get out of bed or move. I can't remember any of that day, I know i spoke to family on the phone because they told me yesterday but I have no recollection of it.
I was on holiday for 12 days, went back to work on Monday and today was my day off. The same thing has happened. I am so fatigued I could cry. I don't know how I'll try to work tomorrow another 10 hour day.
I'm waiting for a work review as I'm meant to be going part time on doctors orders but they haven't arranged it yet even though it's been 7 weeks since I requested a meeting.
I live with my partner and he is normally very understanding but tonight he shouted at me to get up and when I tried to explain what I'm feeling he told me to get a grip as I'm not paralysed and it's in my head as much as it may be physical. He's angry because he doesn't want me missing work tomorrow.
He then told me I have to fight through it and put it as mind over matter. This was the last straw that made me see red. Every day is a battle between want i want and have to do and what my useless traitor of a body decides it wants to do. It's exhausting fighting against your own body as I'm sure you all know.
He's become a nurse, agony aunt and a carer all rolled into one and I think it's becoming a strain. I don't want to be a burden to him. He has to do everything at the moment because I can hardly get out of bed. I wouldn't eat, bath or have clean clothes if it wasn't for him to be honest. He's only 28. I'm 26 and we live like hermits.
I am so hurt. It's bad enough having snide comments from my manager at work due to attendance, even though I have provided sick notes every time.
I feel like a complete waste of space and humiliated that people seem think it's all in my head and I would be fine if I made more effort. Especially now the person closest to me is sick of it and we have so little help.
You hit up against so much dismissal trying to get validation and a diagnosis that's it's crushing when it happens at home too.
I don't know what I want people to say to me. I'm very isolated with no friends or family near by so I guess I just want someone to hear me, even if it is on a computer screen.
This is no life. I'm exhausted trying to fight it.
Has anyone else faced resentment? What did you do?
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Nat1291
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Now I know what to look out for with the fatigue hopefully I'll be able to plan ahead and be prepared. It's just floored me at the moment because it was unexpected.
Pain I manage to deal with ok. Some days are better than others!
I feel better to have gotten what I was feeling out in the open. It's quite therapeutic.
Hi I’ve had lupus for 7 years now and sometimes I feel horrible too, the meds make you feel worse and when you don’t take the meds you feel guilty. I understand how you feel. It’s scary sometimes and I don’t think people who don’t have this condition truly understand how it makes you feel. I don’t tell anyone I have this condition, I don’t want sympathy or anyone judging me. It’ll get better with time as far as the way you handle it. I pray you stay strong and don’t do too much no matter what others think or say.
I'm sorry to hear that you are having such a hard time...
The chronic pain and fatigue that most of us here go through on an almost daily basis is hard enough, but when your partner and or family and friends don't understand, or care to for that matter, and treat us like it's all in our heads and why can't we just shake it off...or get over it....it makes things so much worse for those of us who are already suffering!!!!!
It only adds to our depression and to our stress levels! Which we know can cause us further physical pain.
My ex husband became so angry and abusive after I got sick!!!!
Immediately after my youngest son was born, I became very ill, was practically bedridden, and was in so much pain!!!! (mostly in my joints). Before this I was very active!!!! I had a wonderful family, a wonderful job, my relationship was as close to perfect as I could have ever asked for!!!!
We were best friends! We were both body builders and worked out together....spent weekends at the cottage with family...everything was amazing!
But after I got sick....everything changed!!!! So much for " in sickness and in Health" lol.
Like I said, my husband became very angry, and very emotionally, mentally, and financially abusive!!! Because I could no longer work, everything became "his". Our home we bought together, the vehicles, the income.....it was a horrible situation! I had to beg him for money if the kids needed anything.... I couldn't even go for a haircut because that was too expensive and a waste of money...I went years without one.
I ended up turning to my pain medication to numb myself from how badly he treated me.
I could go on....lol, but what I am getting at is that I wish I would have had the backbone to leave him early on....nobody deserves to be treated badly. Especially when dealing with a life altering disease such as this!!!
Has your partner read up on lupus??? So he has an idea of what we deal with every single day?
One thing that has helped me TREMENDOUSLY, and I understand that everyone is different so my experience isn't a one size fits all for everyone....is changing my diet! About a year ago, I decided to go gluten-free after seeing quite a few people online mentioning that doing so helped with their pain level as well as their energy level.
Within a few weeks, I started to notice that my severe depression had lifted considerably. I was actually waking up happy... For no reason!!!! My pain levels went from 200/100 to about a 50/100 and continued to decline as months went on. About 6 months in, I felt AMAZING!!!! Then I did something stupid....I figured maybe I was in remission...maybe I could try eating gluten again...lol, BIG mistake!!!! Within 2-3 weeks my pain was back with a vengeance!!!! As was my depressed mood and I had no energy!!!!!
Since adhering to the diet again....I'm back to feeling much better again!!! It has changed my life so drastically!
Before the diet, I could barely walk a block, or stand for more than a few minutes at a time!
Now, I am volunteering, getting out, exercising, and recently my 9 yr old grandaughter has been placed in my care. Had she needed me 2 years ago, I honestly don't think I could have taken her in!!! As much as I love her...there is no way I could have walked her to and from school daily or even been able to get out of bed early, or cook her meals....
The reason I mention all of this is if anyone out there is willing to give the gluten-free diet a try for a couple of months and it helps them as much as it helped me...it would be worth my babbling on!!!!!!
I forgot to mention that seeing a counsellor (one who is familiar with lupus/autoimmune disorders) could help in your situation.... If your partner hears from another person who is educated on the subject, it could help him to see your situation and understand it better!
I'm hoping he isn't callous and mean spirited like my ex was...and is open to the idea of working through these issues!!!!
Hoping all the best for you!!!! Keeping you in my prayers!
Cher
PS. If you ever need/want someone to talk to....I'm here any time!!!!!
I know what you are going through my signicifcant was ok at first and your right no kne kniws what we are going through except us. Fighting through it has seem to be the hardest part to do, and I can't even begin to explain what I am. Going THROUGH with this disease and to be honest every night I have to go through with what feels like worms coming in and out if my boils. Call it all in my head but I know what I'm feeling and the Drs in U.S dont know nothing nothing I teach them. Read about wire loop. Thats something I'm dealing with sickle cell, slojens, and other 3 diagnosis its scary and no Dr can tell me anything what's really happening all I know is it is progressing quickly I'm here if you want to chat , it is a very lonely road to take so I understand what you are going through
Little dose of prednisone will help you in getting energy back. Consult your GP
Little difficulty in the morning to get out of bed is common, but once you start moving the blood circulation will improve and definitely you will get more energy
You are young, you have to go a long way, my wife also use to shout at me if I take more leave, but now a days it gives me energy to go to office.
Under treatment for last 18 Years, still I am working with ups and downs
Lupus is, indeed, one of the most insideous and life changing of diseases. The variable pain issues are tough enough to cope with but the ever present fatigue just makes it almost unbearable. The fact that it forces changes in ones lifestyle, usually not for the better, just adds to the struggle.
Lupus medical specialists are fully aware of the issues but, unfortunately, the government and its agencies are either unaware or choose not to be aware of the very serious issues lupus sufferers have to overcome on a daily basis.
I was diagnosed with SLE five years ago and, after a very active life I found that at 55 years of age my lifestyle has had to change completely. The biggest issue for me though, was my financial future security. The government agencies force lupies to "jump through hoops" in order to obtain financial assistance at a time when they are least able to do it. Add "lupus cognative dysfunction" issues and the whole challenge becomes a real battle!
Why can't the powers that be just take the expert opinion of lupus specialists and not rely on their bureaucrats for assessments which will affect a persons future?
I’m so sorry to hear how you are suffering at the moment and you feel your partner isn’t being supportive.
I am like you in the investigative stage of being diagnosed not lupus but for Crest and Sjögrens. I really don’t know how you manage to carry on working to be honest. I have been off work since August as my job is quite intense keyboard and screen work, my hands are so stiff they feel like they are turning to stone so I struggle to type and with Sjögrens my eyes got so painful staring at the screen for hours. As for the fatigue I fought through it for months until eventually I was so poorly I could hardly stand. I am lucky to be in the position of being able to get full pay on sick for 6 months otherwise I don’t know what I would do as I’m a single mum with a mortgage, are you able to go on sick ? otherwise you might end up in the state I was which wasn’t good and took me ages to get over. I have a really good family who are supportive and a boyfriend of 2 years who is understanding although I feel a burden to him as I don’t want him to be lumbered with me.
I have started to pace myself day to day and I’m so much better. Even getting a shower and washing my hair I plan into my day so I can rest after doing anything it’s the way I cope and it’s working.
The other reason I replied to your post is because like Cherz I am trying gluten free as I also have digestive problems with Crest, only been on it a week but already feeling better, I know it’s early days but I’m willing to try anything.
I am struggling with accepting that I can’t do what I used to and like you I feel lonely and down even though I do have people around me I still feel a burden and that no one really understands but I have started to listen to my body and if it needs to rest I do, if I need to spend a day in bed I do or sleep during the day.
Talk to work let them know if they don’t get on with it and reduce your hours your going to have to go on sick and sit down with your partner and talk maybe print some information off for him to read I’m sure he loves you and is just struggling with the change like you are.
Thank you all so much for the very kind replies, it has been a tonic to have people reach out to me who understand what I'm feeling and going through.
Firstly I'd like to say that I'm sorry so many of you have found yourselves in a relationship that wasn't supportive of your needs. It's a very difficult balancing act.
I had a sit down with my partner and got everything off my chest and he explained how he is feeling too. It seems like out main issue is a lack of communication.
I'm the sort that struggles through without really saying what's going on until I find myself unable to move, which means that he has no idea how bad things have become and it takes him by surprise. He has found it difficult to understand how I'm apparently fine one day then I have a terrible day.
It's so unpredictable but there are signs there which I generally ignore so I guess the main thing I can do is talk more and listen to my body.
I do need a certain amount of nagging because it does motivate me. I've got up this morning and am on my way to work.
As upset as I was, I feel like this was needed so that we understand eachother and I need to make sure he doesn't feel like I take him for granted.
The most difficult thing for him is that he remembers how I was when we first got together three years ago and finds I hard to see how I am now. We've known eachother ten years and doesn't help that we have run up against so many brick walls trying to get a diagnosis that he feels helpless and I feel hopeless.
He is generally so good to me that it was a shock to hear him like this but I suppose I never really thought about how it is for him too.
I am going to look into going gluten free. I've suffered with GI issues since I was a very young teen. I have a duodenal ulcer at 14, it wasn't caught until I was 17. I've now got a hiatus hernia and am Lansoprazole for life. I've currently got an inflamed bowel so I think a change in diet may do me the world of good.
I'm going to put my foot down at work today and tell them that I'll have to go on sick leave if they don't set a meeting because I cannot continue full time. The stress of worrying about my attendance is only adding to it all. I have the support of my gp.
I spend 9-10 hours a day in an office staring at a computer and it is killing me. I was told to get my work OT team to set me up with more appropriate seating etc by the hospital but they have still not come to see me. Pretty hopeless lot really.
I feel much more cheerful today from all your kind messages and from having a heart to heart with my partner.
Thank you all once again. Best wishes to all you lovely fighters xxx
So sorry you are feeling this way, you aren’t alone even though it feels incredibly so at times.
I’m still waiting on a diagnosis too, very similar to you, for a long time I felt my husband didn’t understand, it’s so difficult because on the outside you can look so fit and healthy so you almost feel like a fraud?!
I have to say though, I sent off for a load of the Lupus UK leaflets, I wanted them for my own library but I also purposely left them lying around in the hope that when he was ‘ready’ he’d pick them up and read them, he did...and from then on I’ve found a change in his attitude towards it all, he even came to a lecture last month because ‘it’s important we understand as much as we can’.
Maybe I’m a lucky one, but sometimes it’s denial on their part that something is wrong?
Almost 90% of people with lupus report experiencing fatigue making it one of the most common symptoms of lupus. We published a blog article on managing fatigue which I hope you will find useful: lupusuk.org.uk/managing-fat...
If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies sent to you, please email me at Chanpreet@lupusuk.org.uk.
Having someone to speak to can help improve your overall wellbeing as well as help you cope with certain situations which can be tough. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me.
We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....
Can I suggest you take your partner to an appointment or get him to read some information on Lupus and Sjogren's? Best of luck x
Hi, I don't know where you work or what your contract is, but my advice is that if you have a union seek advice. If not call citizens advice. If you have been advised by your doctor to reduce your hours you have a couple of choices. This can either be permanent or you can take sick leave and then do a graded return to work. Of course this relies on whether you have been in post long enough. If your money drops you can apply for ESA which will top up statutory sick pay, if needed. If you have not heard from your employers, it is worth pursuing as they will not understand the condition. You may have an occupational health team.
This may help alittle with your partners concerns. It is difficult for us who feel the affects but must be as hard for our families who are trying to make sense of it. They see us change, in pain, different people. My husband has been through a sort of bereavement and now come out the other side. Once your treatment plan is clear and things start to become manageable.
I haven’t read through the other posts but just wanted to reply with a (((hug))). Pacing yourself and spotting the fatigue signs is the bit I’ve found hardest but if nobody else has suggested it yet google “spoon theory” - it really helped me get my head round it and I now refer people to it to help them understand what it’s like. I must admit I burst into tears first time I read it though as I was just “that’s it - that’s exactly what it’s like” and after years fighting to get diagnosed it was emotional to know it wasn’t all in my head. Keep on fighting and you’ll get there xx
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The doom & gloom of my bedroom
Update on my rheumy appointment this morning. What a shocker!
Feel so alone. 
Off work feeling guilty
New to all this....Advice?
