The invisible disease

[Oxfordjojo]

So I have been off work with really bad flare of undifferentiated connective tissue disease. Due blood results tomorrow. Soonest consultant can see me is 7th Oct. I’m hoping they can start a treatment plan on the basis of the blood tests rather than wait til 7th. GP happy to sign me off until I feel able to work. Husband thinks I’m an inconvenience and that I should take my sickness time off work as annual leave! I’ve never felt so unsupported. 😥 I’ve never Contemplated being signed off before and certainly won’t take the decision lightly. He actually said “what will people at your work think since you’ve only come off furlough end of July!” Yes - timing not great but we all know we can’t pick and choose when we get a flare or how bad it will be. Sorry needed to vent tonight!! I’m at my wits end feeling rubbish and being treated like it too.

[Horsewhisper]

Hi Oxfordjojo, I’m sorry to hear about your really bad flare, sounds like it’s quite debilitating and a worry for you. Hopefully you will get a treatment plan in place soon enough and that you will start to feel some respite from the symptoms. You are most likely aware that these AI diseases quite often present with symptoms that are not always physical to see and it can be frustrating for those around us to understand fully the effect that these diseases have on us. It takes time for those closest to us to get used to the “new normal” that we are experiencing and like we have to adapt, they have to adapt too. It takes time. Family members quite often harbour their own concerns about us and sometimes think that if we stick to normal routines and carry on as normal and at the same pace, everything will be ok. But we know we can’t do that! We have to make adjustments and find different ways of doing things to live the “new normal” and loved ones around us need to get used to this.

If I were you (and I have been in a similar situation) take the sign off from work, don’t feel guilty about it, you need to rest. Your body is fighting you at the moment, you don’t need any other battles on the home or work front. Just stop for a while until your UCTD is back under control. I wish you all the best and do keep us posted as to how you get on. A big hug to you from a fellow UCTD’er right now🤗

[Oxfordjojo in reply to Horsewhisper]

Thank you so much. I appreciate your advice and support so much. This forum has the most amazing people on it!

[Horsewhisper in reply to Oxfordjojo]

No problem at all - I too have received brilliant advice and support from people here and the PMR/GCA forum. I would have felt quite lost at times without it. Xxx

[Spanielmadlady]

Oh oxfordjojo. Sorry you feel unsupported and being made to feel guilty by your family.have they read the spoon theory ? Steroids may help short term but i wouldnt get your hopes up about a treatment plan from your gp as drugs may need to be prescribed and monitored by your consultant first before being handed over for your gp to prescribe if they think you need another immunosuppressant like methotrexate or mmf.you may need a shared care agreement first and that is usually done once your bloods are stable.

I cant work as I'm on immunosuppressants so I have no immune system so why shouldnt you take sick leave.try not to let him stress you out as it will feed your flare.

There is plenty of understanding and support here...we understanding you.big hug xx

[LalSD]

Hi Oxfordjojo. After all you yourself know when to stop and when to start. Our illness is not always visible. Even though close friends, relatives see our pain, it is sometimes impossible for them to understand. I think this is partly human nature. They can not know how bad it gets. In their mind, two options, she is well or she is poorly. Having a flare and not being able to move or having pains does not register in our partner’s mind. Therefore they just focus on the facts of life and consequences.

Even after furlough You can get sick leave. We can not plan our illness. In fact if it is supported by a letter from the GP, you have the best support.

Also please note, the lock down has triggered all our illnesses. I am having the worse flare I had since 8 years. We could not access proper medical care. We could not get our usual blood tests which gives us the indication something is not going right, first alarm, to prevent a flare. We could not get enough light or regular walks to get our blood running, no proper holiday etc etc It is expected to have a flare. Our sleeping habits changed. So given all the difficulties physically, mentally and emotionally, I am sure you are entitled to be sick and as a result, can be on sick leave. Don’t feel bad, and ask Help it if you need it. Moreover, it may be worse if you don’t do it now.

Lots of love. Lale x

[RosieA]

Oh dear. Perhaps the stress of what is happening with Covid etc at the moment is getting the better of your OH. It can be very difficult for some to manage their stresses and it often ends up with those closest to them having to bear the brunt. Sadly, it is likely to make you feel worse. The loneliness of feeling unsupported and misunderstood is so destructive for us.

You certainly can not help flaring. Take sick leave, that's what you are. I should imagine a few raised eyebrows if you decided to take anual leave!

I do so hope you feel supported here and it's always great to vent - a healing process all by itself. Shame it isn't on prescription. xx

[Oxfordjojo in reply to RosieA]

Thank you RosieA!

[svfarmer]

I’m so very sorry your feeling so rubbish at the moment and that your husband is making feel worse - if I were you I would take sick leave - after all you are sick and can’t help it - no way should you take annual leave- I myself had to give up my job 4 years ago due to my lupus . I hope you start feeling better soon and this group is just fab to give you sympathy and advice xx