What do I do now

Hi everyone

I haven,t been on for a while as I have had a lot happening

Tuesday of this week I took my husband to have his Lumber punchure procedure. One very scared and frightened man. I am pleased to say all went well. The doctor let me stay with him and my hands have just recovered from being crushed.

All was going well until we came to drive home and I got lost. So a journey that should have taken 30 minutes took 3 hours. I thought we would take the scenic route route home round Birmingham!!!! I managed to get onto the M% heading to Wales - please no comments about women drivers and their sense of direction or lack there off

We have been told that the flat we have lived in for the last 10 years is no longer suitable for our needs and we have got to move to a ground floor. This is frighening to accept that you are no longer able to do what you have done normally for so long.

Both of us are slowly comming to terms with the fact we are both disabled in our 40's. Bath time is hilarious - me with RA trying to lift a 5ft 8 man out of a bath when his right hand arm is useless. A very easy way to wash the bathroom floor but I would not reccommend it!!!

I am back on the transport department at work as my collegue could not cope - so all the hard work with HR was in vain. I am not sure what to do now?

I am having to deal with the complicated benefit system, my husband nurses whilst trying to cope holding down a full time job. Who said life is fair because whoever said it was having a very sick joke. I need time out and do not know how to do it as I am the only one working.

I feel so guilty as there are worse people than me out there - but this is my RA and I am tired in pain, frightened and feel useless all at the same time

I hope that all of you are coping keeping warm and not in too much pain

Take care all of you

Susanh xx

7 Replies

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  • hi,

    sorry to hear things are not too good at the moment - is it worth booking an appt at citizens advise so you can sit down with someone who would be able to

    help you with benefit form and info?

    just a thought - anything is worth a try instead of doing it all yourself.

    xxxxxxxxx

  • Susan, God i can't believe that you are not off the transport - I agree you are dealing with far more than is reasonable but you do seem to be able to deal with what is thrown your way with such dignity and humour.

    I really do not have a clue about the benefits system but BB has a good suggestion to go to the citizens advice bureau or the GP might know. If Lavender Lady is on she may have some advice too. Have you ever had any contact with the carers association?

    You are doing so much so you are being far from useless but things are happening beyond your control and you do need some good guidance from someone who knows whats what.

    All the best Susan, hope someone somewhere can help.

  • Hi Susan. Once again I'm overawed by the level of suffering some on this forum have to cope with and as Mads says you do it with great dignity and humour, despite being understandably got down by it all.

    I know nothing about the benefit system either but am sure CAB suggestion is a good place to start. Do you or your husband have anyone from social services to speak up for you or an OT re your work situation - or would your GP be able to help access support for you both perhaps?

    It can't be right that you are having to cope as a full time carer in the evenings and at bedtimes if you have RA to cope with? The physical demands of this must be very hard on your joints - let alone on the tiredness if you are also holding down a job. It seems to me that you need to work out which is the most important thing of all these to address - getting your workplace to do what's right or getting supports in place to help you and your husband with bathing etc such as a bath lift or hoist or whatever devices would help you both the most? Whichever you decide on put at the top of your help list and show the CAB. I wish you luck with it all - let us know how you get on please. TTxx

  • Susan,like the others have said i agree. Go to social services and see what they can do. Also jobcentre and as to see the disablement officer they will be able to help too. Have you got a d.i.a.l they help the disabled. Do you haveba union where you work if so go and speak to them. Check with the nras and see what they have to say i think they will be able to give you very good advice. Also your gp get him him to write you a letter about your and hubbys state of health and how disabled you both are,also get the hospital to do the same.

    This is the best advice i can give you,sending you my thoughts and prayers and i wish you both some peace.

    Love sylvi.xx

  • Hi

    Looks like everythings been said by all the great people above but just hope you get sorted soon, you are the hidden carers that are overlooked in this country.

    Hope you get help soon.

    Axx

  • Oh dear Susan, I am arriving late to this blog, but you are and will be in my thoughts and prayers every day. So hoping things will soon fall in place to relieve some of what you both are enduring. L. xxx

  • I just had back surgery 3 my the ago. I hope he heals well.

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