Feeling Totally Useless

My mum has severe tonsillitis. She lives on her own. And because my immune system is screwed up thanks to ME/CFS I can’t go and see her. I can’t run over there and help. I don’t even have the energy to go and make her a cup of tea, heat some soup or fetch a prescription.  This is not how life was supposed to be.

Yesterday my dad took me out for an hour. I asked to go to a nature reserve nearby. He pushed me around the lake/pool in my wheelchair and even though his pace was fast I could hear a slight wheeze in his breathing.  We passed a couple about the same age as him with a pushchair containing a small child – I presume their grandchild. I hung my head in shame. My dad shouldn’t be psuhing his 35 year old daughter around on a sunny autumn afternoon – he should be feeding the ducks with his grandchild.  A grandchild that does not exist and may never exist is ME/CFS continues to beat me.

I tried hard to get to a point where I was earning enough in my job to have a comfortable life (ie. not having to scrape by every month) and where I could save and one day know that I could support my parents if they needed it.  That as they got older I could offer them a little help if they were in a tight spot.  Now the only income I have is from a small government assistance meant to help me with my care and mobility needs. I can’t work. I don’t earn.

Whenever my mom had a problem around the house if I could help fix it I would be the first there. My brother isn’t the practical kind and my eldest brother is absent 364 days of the year on average.  I would be the one to decorate, move furniture, fix a fuse, strip carpet out – get stuck in and get the job done.  I’d be the one to take the afternoon off work as holiday and drive 30 miles to take my mom to a hospital appointment.  Now I’m struggling to get myself downstairs to my own sofa.

Postscript: Growler says it’s good to focus on what I do have. A dad who can take me out and spend time with me, a mom who is able to live alone and a brother who is as we speak over there visiting her and taking supplies. To focus on the positives.  I’m trying to do so. 

It’s like being hit hard all over again by that grieving for who I was, what I had and what lay ahead.  Grieving for a future that hadn’t happened and being struck by one that now might and how different they look.  That life isn’t turning out how I’d wanted – and we’re not talking fancy cars and houses, we’re talking simple basics of ability and function.

I can’t say I’m able to wrap up the grief and the pain easily.  But as ever, with a supportive partner and family and friends, I can try to shift my focus slowly around to be thankful and positive, not dwelling on the fears and the grief.

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8 Responses to “Feeling Totally Useless”


  1. 1 Nina October 9, 2008 at 2:14 pm

    Growler forgot to mention HIMSELF!

  2. 2 ashysheela October 9, 2008 at 6:57 pm

    I am sure you give so much support in other ways to your family, little consolation as it may seem.

    Sorry you are struggling with this, as i am sure you have before, it’s funny how little things trigger it all over again and it is so fresh as though we are feeling it for the first time. I suppose we cannot fully get over things which are unresolved… i am always amazed at the cycles of grieving i go through, no matter how much i have grieved before, or how long i have been in this situation, it is only human and important to let it out so don’t try to be positive right away, have a wallow first, i find I can move on better afterwards… 🙂

    We can still play some valuable roles in life and family relationships, even if they are not the ones we would have played as healthy people. Even if we cannot contribute anything we are still valid, but this is so contrary to all that society tells us… it is so much easier to give care than recieve…

    this is sounding a bit too philosophical now but i hope it is not too annoying and the message of support is what is coming through!

  3. 3 rachelcreative October 10, 2008 at 8:09 am

    Nina – Oh yes – quite right!

    Ashy – Thanks yes hearing your support loud and clear. Philosophical is fine too :o)

  4. 4 cusp October 11, 2008 at 10:01 am

    It seems terribly cruel to say so but it does seem to come with the territory of suddenly having the rug pulled from under yourself and all your expectations and dream and assumptions. I do have a very real sense of how you must be feeling. Ten years ago I was struggling to juggle full time job, new baby, 3 year old, Father with Alzheimer’s and Mum grieving for the husband that was disappearing and also had own medical conditions. I did the best I could and was exhausted most of the time: but not in the M.E. sense since it hadn’t been diag. then.

    3 years after that: I have M.E., Dad’s died and Mum is ill and dying and there is little or nothing I can do…..couldn’t go to hospital with her, couldn’t go over and make cups of tea and give hugs, couldn’t do any of the things I had done for Dad…and there is only me to do it because I’m an only child. I still wake up in the night feeling guilty but in reality I know I did the best I could: I rang three times a day, sent cards, presents, flowers, sorted out carers etc etc and somehow, I got to the Hospice for my Mum whenever I could.

    You do a fantastic job of managing your M.E. and the changes you’ve had to make. I know that the blogs probably offer up an edited version of your life but still a strong spirit shines through. In your way you are still doing what you can for your parents and they, in their turn, are doing what they can for you. Even if your Dad is wheezy, he’s doing what he’s doing because he cares for you and it gives him pleasure and reassurance. I can tell you, as a parent, that your children will always be your children, your babies whether they are 3 or 30. However hard it is for yourself, when you love your children you’ll do anything for them.

    As long as your parents and family know you care and you continue to do what you can, however small in your eyes, you’re doing your best and that’s all you can do. Still, it doesn’t salve the grief we (as PWME) all feel for the ‘what ifs’ and the ‘might have beens’.

    You should be proud of yourself and feel reassured that you have a partner and family who care for amd love one another.

  5. 5 rachelcreative October 12, 2008 at 8:33 am

    Thank you Cusp. Thank you.

  6. 6 Connie October 17, 2008 at 3:40 am

    It’s OK to feel down, you’re allowed! A pity party once in while is required medicine for us especially when a sudden reality hits.

    So wonderful that you have Growler there for you.

  7. 7 rachelcreative October 17, 2008 at 5:00 pm

    Thanks Connie. Yes I’m very fortunate.

  8. 8 Jaime October 22, 2008 at 4:09 pm

    You can’t know how much you help and support those of us across the globe who tune in to listen and relate to the struggles you are having. For me it is like fresh air to hear the musings of someone who actually, really gets it. It makes me feel less alone in all of this. It is such a devastation.
    Thanks
    Jaime


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