Return to work

[Bubble89]

I've been signed off for the last 3 weeks, and this week I already had booked off as holiday, so in total I will have been off for a month. I'm due back on Monday and I'm dreading it.

I love my job, I really do. But in the run up to being signed off I reached my limit. Things had been slipping since Christnas, and I had reached a point where work was all I could manage. I kept trying to push through which I now know was a mistake. by the time I was signed off I was working and sleeping. The house was a state, I was barely washed and presentable enough to be at work. I wasn't going out or seeing anyone or exercising. I really felt like I had completely lost control. I kept thinking I just needed to get to the week I had booked off. Then just to the weekend. Then to the end of the day. Then I just couldn't face it anymore.

About mid last week I started to feel a little better. I wouldn't say I feel great, but some of the fog is starting to lift. I feel like I have a little more charge in my batteries. I've managed to get the house sorted and washing done. I've been swimming and for some gentle walks. For the first time in a long time I feel like I'm finally looking after myself properly, and I feel like I've regained some control. I actually feel like I'm managing, which has made me realise that I really haven't been for some time.

I'm dreading going back to work. I love my job but it's stressful. And I'm so worried about everything falling apart again. My doctor isn't prepared to prescribe anything until I've seen the specialist, and the waiting list is currently 6-8 months for Rhumatology. GP has suggested I see the doctor at the practice that specialises in managing fatigue. I must admit I'm reluctant. We have to pay for gp appointments here, and it feels like a waste of £50. I've been dealing with this for the better part of 10 years. I don't know what they're going to be able to suggest that I don't already do. The problem is that my health is deteriorating and its becoming unmanageable.

Tried to talk to my partner about how worried I am earlier but I just don't feel he understands. He just keeps saying 'well don't let things slide again' like it's a choice I'm participating in. He has this thing about being accountable for behavior, which I'm on board with, it's something I have to practice a lot in my job. But "you're 100% in control of the choices you make" is not helpful, because then it feels like he's suggesting I'm being lazy. I want nothing more than to be juggling everything in my life like a rockstar right now, but it's just not happening, and I feel like I'm failing. And I feel like I'm surrounded by people who can't understand why I'm finding this so hard.

In fairness to my employer, they're being amazing. They're arranging for me to see occupational health. And I think I need to start being more honest with them now about how much I'm struggling. But I'm embarrassed. I pride myself on how hard I work, and I live in terror of being judged or not believed.

This mystery Rhumatology appointment just feels a really long way away today, and between now and then I just have to cope. I'm getting married in 4 months and I really want to enjoy the run up to my wedding. But at the moment it just feels like another task on an unmanageable list. And like my partner is waiting for me to 'pull myself together' so we can get on with life.

Sorry for the moan. Return to work anxiety and far too much time sat on my own wallowing in it today I think!

[Mainecoone]

Hi Bubble

I am where you are but I was diagnosed over 20 years ago. Denial is normal. It is the first stage of loss (see Kubler-Ross stages of loss when you are ready).

Internal and external expectations are tough to cope with when in a flare but when it comes down to it your health is what is the most important.

You need to put yourself first and listen to your body. Speak to Occ Health as soon as you are back to work and try to negotiate a gradual return to work (see if you can email your GP to get them on board prior to seeing Occ Health).

It would help if your partner could realise that you are so tired your body feels like it is coated in lead. Tell him he needs to research chronic fatigue, lupus, rheumatoid arthritis and fibromyalgia to start with... you have little to no control over any “choice” when you have no energy to engage and accomplish tiny tasks never mind activities... deep breath... i had to vent that and get it out... sadly he will not be the only one who thinks like that...

Another description I used to use is to ask them if they remember how tired they felt when they had really awful flu and tell them you feel like that ALL THE TIME...

Look up Brene Brown TED talks online. She also has a brilliant book “The power of vulnerability” advising how one should not feel ashamed of being ill. I am what the American’s call an ‘army brat’ and coping with illness after that upbringing was difficult...

You are not failing as all expectations (your own and others) should be rendered null and void. I have been signed off for 6 months. I give myself a single activity to fulfil when i wake up each day depending on how I feel in order to feel i have achieved something. Yesterday I managed to go downstairs once to have tea with hubby when he got home from work. Today i accomplished three things (a very good day), I had a shower, washed my hair and washed the dishes. But now in so much pain I cannot sleep and am using this app to take my mind off it...

If it were me I would see the GP specialising in chronic fatigue as they might be able to prescribe Plaquenil (usu the first port of call). It takes approx 6-9 weeks to work and they might agree to the possibility of more time off or a gradual return to work. He/she might also give you further evidence for Occ Health to aid your situation.

You need to make a few decisions i think, i send hugs and strength to do what you need to do... Take care of yourself Bubble Pxxx

[Bubble89 in reply to Mainecoone]

Hey Mainecoone

Thanks for your reply. I think I am going to make the doctor's appointment. At least, if nothing else, I can show them I'm doing everything they suggest. My GP has spoken to me about hydroxychloroquin but is adamant that they won't prescribe until I've seen a specialist. I had to see a different gp for my first sick note and she talked to me about steroids, but said she would defer to my GP and he said no. I will mention it again when I go in though. I know it will take a while to work, and if I have to wait for the specialist then we're looking at next year realistically before I start to notice any change.

My partner is frustrating. Sometimes he really seems to get it. He says he does lots of reading about all my various health issues. He had been training as a personal trainer and spent lots of time researching fibromyalgia so he could figure out how to help me. But other times it's like he swings completely the other way. I think maybe he has a bit of a foot in mouth problem. He tends to say things with the best of intentions, and I'm so hypersensitive to anything to do with my health it immediately sends me into a shame spiral about it all. I do think he means well. He wants to help motivate me to keep going whilst we figure this out. I just don't think he understands the feeling of having nothing left to give. He understands the theory, he's just never experienced the reality.

I'm just frustrated and fed up and angry at the moment I think. A few weeks ago, when I finally gave myself permission to stop, I had this massive sense of relief. But with that has come this sense of how unfair this all feels. I've spent so many years like this now and I feel robbed. And getting help still seems so far off. It's been frightening for me to realise that I'm only 29, but working full time means that I can't take care of myself.

I'm going to use the occ health appointment to my full advantage. I've actually seen a different job that I'm going to apply for this morning. It would make me sad to leave my current place, but this job is less hours. I've accepted I've got to start having more of a balance if I'm going to keep myself well.

Take care Mainecoone x

[Mainecoone]

Sending gentle hugs. It’s almost 1pm and I am still in pj’s and haven’t made it downstairs yet... so tired of watching tv...

insight like caring cannot be taught unfortunately, when i was lecturing we used to debate how It could be taught if it were possible...

my hubby understands the lupus as his mum had it, but cannot understand or even sympathise with the blinding migraines...

Someone said something about only understanding if they could walk a mile in your shoes... perhaps try and find other media sources on chronic fatigue perhaps to see if that would help.

Have you tried changing you diet? That is something you can act on and insert a little control. Start with going dairy and gluten free. I messaged someone yesterday with costochondritis about diet, my hands are really sore today after all the messaging yesterday so do a search for it if you want to make changes. Diet worked really well for me, my flares aren’t anywhere as bad as what they used to be. Take care sweetheart am thinking of you.