Always hope I'll feel a bit better at the weekend -I work Monday to Friday but just finding I need to rest up all weekend, and still struggle with stiffness, pain and fatigue. Try to prioritise and plan - but so fatigued during the week I keep thinking - will try and catch up on that at the weekend.
Over the past couple of months things just keep spiralling down as never well enough to do what needs done other than the barest of essentials. On my own most of the time so a bit of a struggle. I try not to get frustrated or upset - but not doing so well at that at the moment. Can't take time off work as have already triggered the sickness absence policy, so spend all my energy trying to keep working. Rest of life is then totally curtailed - anyone else working in the same situation?
Waiting for contact from company re getting my first Enbrel. Right now could just curl up and hibernate till then! Have run out of coping techniques!
Hi AuroraB, I totally get how you're feeling. I stopped working just after Christmas because I simply couldn't manage any longer and having my own business I was working seven days a week so never got the chance to recover. Also like you I've been playing the waiting game for more treatment .... my Simponi is arriving Thursday, yippee. My only coping technique over these last few weeks has been constantly reminding myself that treatment is coming and trying to 'let go' of the stress of worrying about the things I just haven't been able to do. It's lovely and sunny here in Norfolk today so that helps lift my spirits as well. Hope Scotland is bright for you.
Hopefully after you start taking Enbrel you will be feeling much better. I'm taking Enbrel now and I still have issues with fatigue but it is better. When I was soooo fatigued, I just accepted that things weren't going to get down for awhile, maybe even months - just saying that to myself gave me relief that I didn't have to worry about it.
Yes, I get it! By Friday I am so tired I can’t think of going out or anything. Then Saturday comes and all I want to do is rest more. Lately, I get myself going to do a few chores around the house and I stop after one chore so that I can rest again. The house is never clean and I rarely get to any of the paperwork that I bring home from the job. I hate being “behind” on everything.
I have also used all my sick time already this year bc of so many upper respiratory infections/flu this year. Just “keep on keepin on”
I know the feeling, I'm on Enbrel but it only seems to help for 4 days and not the full week. I take it on Fridays to try to have a decent weekend, but even then it's not great. I seem to be dragging, no matter how much I sleep I'm still tired, and work is getting harder and harder. I've got sick time but dread having to call in, I've missed time enough I'm sure a write up in coming, unless I file for family medical leave and really dread doing that, too. This is all so discouraging.
I understand those feelings. I had struggled trying to keeping it all going and had the misfortune of not getting a diagnosis for quite a while. I had all I could do to keep working.
As difficult as it seems right now, you have a number of positive things happening. You have a diagnosis. Knowing what is going on is half the battle. Next, you are about to start a biologic which should help. Things got better for me when I feared it may not. Your concerns are warranted but you situation is far from hopeless.
I am not sure about your employment situation. You mentioned that you have triggered the sickness absence policy. I can see where it would heighten your concerns. I am not familiar with the policies in the UK but I expect there are protections for your employment should you need to take a medical leave. In the US, the family leave act affords such protection for a period of time. Further, PsA causes disability and as such, the US disabilities act offer additional protections.
Too often we rely on hearsay when we shouldn't. I found that looking into the medical leave and disability policies and how they might apply to my situation really helped to give me an informed and realistic view of my options. I spoke directly with the agencies and discussed in detail the possible trajectories and various supports/benefits that were available. It quelled a lot of my fears and concerns & freed me up to focus on my wellness.
You are dealing with a serious illness. I know how difficult it is to let go of the guilt regarding work. But I found a lot of my guilt was self imposed. When I availed myself to medical leave it allowed me to focus on healing and most people were very understanding.
I also had a lot of difficulty asking for help. In hindsight, I was holding myself to an unreasonable standard. I was very reluctant to ask for help or let people help when they offered. I started counselling and learned to start availing myself to support in all forms. It was a difficult hurdle to clear but in hindsight I wish I had done so much sooner.
Perhaps if you speak to the appropriate agencies regarding your possible medical leave and the policies and benefits involved, it will help. I know that when I did this, I felt like I was taking charge of my situation and it really helped me attitude improve.
I hope the enbrel brings you much needed relief . Healing wishes ;)
I think so many of us know exactly what you're feeling, physically and emotionally. I am sorry you're dealing with the fatigue AND waiting for your med.
One of the hardest things about chronic illness is that it goes on and on (a lot like this winter weather!). And you can't look forward to the 'getting better' part. Another hard thing is how it isolates. Hopefully, posting on this forum will help with the latter. And maybe the Embrel will ease the illness itself.
Coping techniques? Talk to your support group! Whoever, wherever that may be (including here).
My sadness at the moment sounds a lot like yours (OK, not JUST at this moment, but more frequently t han I would like): it takes so much energy fighting through the fatigue to do the basics and the necessities, that most of the things I used to do that enriched my life or added enjoyment-----don't happen.
Hi AuroraB, dandylons makes a good point about employment and sickness policies. If you're ill, you're ill ...... my old company policy meant you self certificated for the first week and then after that you had to submit a GP's sickness certificate. As best I can recall ('cos I never needed to use it then and it is a way back now) I would have got full pay for six months and half pay for a further six months after that, beyond 12 months it was long term sick leave and I'm not sure how that was handled but can certainly remember having at least one colleague in that situation for several years.
A really good source of information and advice about your employment rights (as well as sickness benefits if you need to claim) is the Citizens Advice Bureau.
Hopefully, though, you'll only be waiting on the arrival of your Enbrel a few more days. For my biologics I've dealt with Healthcare at Home and Alcura and they both seem to take about two - three weeks to get you your first batch delivered.
Thanks for all the advice and support. The extent and depth of a problem that fatigue can be is just hard to deal with. Feel that people in this group understand that, whereas it is hard for others to grasp. I am so hoping that with Enbrel things will be better and I will be able to reclaim a small portion of my weekend life.
Oh yes, I do understand! I just dropped my hours back...only 30 hrs right now....had to keep at least 30 to keep my insurance benefits. It is exhausting and there is little energy left when I get home so things have really piled up. I have to take the "good days" and just do what I can and say that's good enough......hard to do for me! This disease seems to come in waves....at least for me right now....so we just have to learn to pace ourselves.... :)
I was diagnosed in April 2011 wow .. going on 3 years! I have good days and bad days. I work full time and also have teenage daughters who are involved in Cheerleading. I drive them back and forth in the evenings and also to competitions on weekends throughout the season. There is a lot of travelling involved, and it's pretty tiring! I find, thought, that even with the pain and fatigue, I feel so much better seeing them compete and know that they are having fun. Unfortunately, I don't think my family fully understands what I go through. I constantly get comments about how tired I am and they question why I fall asleep so easily. I guess I must 'hide' a lot of what I'm feeling, because there isn't much sympathy from my husband either. He just comments on how much pain he is in after going to the gym and that I would feel better going to the gym, too. I wish I had the energy to want to go to the gym. I have contemplated trying to cut down on my hours at work and use some of the sick time I have accumulated, but feel I will get backlash from my supervisor for that too. She also sees my not being here as a problem for her and the work not getting done. So, I kind of got on a soapbox here and off topic! Sorry ... But, I commiserate with you about fatigue .. I am on Humira and Methatrexate. They seem to work for the most part, but lately I've had more shoulder and back pain than ever before .. not sure how to battle that!
It's hard with family! Mine at least do understand, and they are the first to point out every weekend when I am esp. worn down that 1) it's the weekend, Mom, no wonder you're tired and 2) you're at the end of your MTX cycle (or the beginning: not sure which is worse with methotrex!), no wonder you're feeling so lousy.
spouse went with me to initial doc visits, including the ones where my family doc and then first rheum wrote down for me on prescription pad what they saw in joints, what they heard re/ the fatigue, b/c I was so (and am still) prone to doubting that there was anything wrong, surely it was just that I had some major character flaw that I felt so exhausted and had such swollen joints, etc. ! That helped, that he was in on it from the beginning. and maybe it helped with my kids over the years that they saw how hard I fought to be 'normal', but just couldn't do it. We talked a lot.
Thanks for chiming in! I think because I always try to be normal, it's hard for them to see me otherwise. I agree about the MTX cycle .. 1st day, I feel all glassy-eyed, but by the end I'm worn out .. I guess I also have to sleep on a more normal schedule and try to get some exercise in to make me feel better .. I just got off a 5 day steroid prescription for back pain, so I'm sure that isn't helping with how I am feeling ..
You're so fortunate to have such a loving and caring family.
Megster said:
Nancy,
It's hard with family! Mine at least do understand, and they are the first to point out every weekend when I am esp. worn down that 1) it's the weekend, Mom, no wonder you're tired and 2) you're at the end of your MTX cycle (or the beginning: not sure which is worse with methotrex!), no wonder you're feeling so lousy.
spouse went with me to initial doc visits, including the ones where my family doc and then first rheum wrote down for me on prescription pad what they saw in joints, what they heard re/ the fatigue, b/c I was so (and am still) prone to doubting that there was anything wrong, surely it was just that I had some major character flaw that I felt so exhausted and had such swollen joints, etc. ! That helped, that he was in on it from the beginning. and maybe it helped with my kids over the years that they saw how hard I fought to be 'normal', but just couldn't do it. We talked a lot.
I've been off the mtx more than on lately, first because I got the flu (despite the shot) and now bc of inflammation in a tooth which meant I'm on antibiotics. so all the tiredness I feel when I'm off it,,,,,,,is back bigtime. sigh.