Scared

[Bea6]

Good morning everyone, just a little update I feel due to the amount of stress I’ve been under recently I hit the deck Thursday… Had the GP out as my symptoms had greatly deteriorated unable to walk my speech much worse as my tremor. Severe pain in my head shivers et cetera GP sent me to A&E query sepsis infection. They did the blood test for this and it came back clear kept me in overnight as I was so poorly and then when morning came just sent me home again with no help and no improvement in my condition. As you are all aware I live alone I beg for help with my care package again the same answer was given until I can afford the contribution required of £400 monthly they are unable to help me. Luckily I have my daughter this weekend as she’s off work.But not sure how we go forward I’m going to get some advice I’ve also started having extreme differences in emotions laughing continuously and nothing really and then crying loads I feel so very very unwell this disease is so varied and no one at the hospital had heard of it the doctor actually asked me what it was. I’m so scared of the future I’m going to get in touch with the hospice Monday and see if they can offer more help advice. I just felt I need to share my battle with someone that understood me xxx bea

[Hidden]

I can’t give any practical advice except for you must push for more help. Hope the hospice can help you. Stay strong x

[TK-67]

I'm so sorry this is so very hard for you - it shouldn't be like this, can your daughter also start to 'shout' on your behalf? I shout a lot for my mum...

I would speak to your MSA nurse on Monday morning and see what they can do to help. Also from our experience hospices can be amazing...they even helped us with the benefits we were entitled to for mum. They may also be help with respite to help you manage what does look like more symptoms arriving - the mood swings are one of those.

If you can get someone to print out the MSA fact sheets on symptoms..we would take these with us.

[Bea6 in reply to TK-67]

Thank you we will see what Monday brings xx

[Hellebelle]

Hi Bea, I am so very sorry that you are having all these problems. It seems that stress and infections can exacerbate symptoms in MSA.

I would strongly urge you to contact a hospice. In our experience, they looked after dad with so much compassion. We were apprehensive to begin with as we associated a hospice with dying, but they are so much more than that. A palliative care doctor coordinated his care and he went into the hospice for symptom control several times. They also advised us when it came to applying for CHC funding which he was successful in getting. They liaised with dad's GP and advised on medication. They even encouraged dad to attend the social and educational events and activities in the day hospice, all of which were free.

I wish you well and just hope you get the help you need.

[phamwales in reply to Hellebelle]

great advice.. i would definitely look at the support from the Hospice.. they will have a lot of connections that might produce a solution

[Bea6]

Thank you I’m going to contact the hospice today so I have continuedDeteriorate over the weekend and need some help xxx

[Hidden]

Sending you love and strength. No rush, but please let us know how you get on with the hospice. Kx

[Bea6 in reply to Hidden]

Good morning Kay just to let you know I’m still waiting for the hospice to visit but the GP came yesterday and started me on antibiotics and increased my steroids one day at a time I guess. Xxx b

[chester2107]

Hi Bea , sorry to read this, it is such a cruel disease , just because it is rare, it shouldn’t make any difference to the help you should be getting ....

My parents get help, but I think it is because they are in their 80S

Luckily our GP has more idea, as his sister in law has it

I hope the hospice can help

Elaine x

[Bea6 in reply to chester2107]

Good morning I had the GP again yesterday as I continue to deteriorate he has started me on antibiotics and increase my steroids as I also have systemic lupus… The hospice are getting back to me today hopefully but my GP felt I am not getting the help and support I need and has referred me for it urgent nursing assessment for continuing healthcare funding… Hopefully I will qualify for this and that will be a big help. I agree there seems to be a massive gap when you fall into a much younger age group at the hospital when they discharge me they said openly that over 65’s there is funding available unfortunately I didn’t qualify for that. My GP was much more helpful yesterday so I’m a little bit more hopeful that help is on the way. Yes I have to say this disease is not at all I had hoped for as I journey on my way xxx

[chester2107 in reply to Bea6]

that’s good that your GP is helping more

I hope you get help from the hospice

as it isn’t easy to deal with on your own

xx

[ZoeSweet7]

Bea, I want to help you so badly 😞😞😞

[Bea6 in reply to ZoeSweet7]

Good morning Zoe thank you so much it’s just nice to know I have friends that care. I had a slightly better day yesterday and I feel like I am making some progress with the social worker. Have a way to go but I’m going to battle on. Xxxx

[ZoeSweet7 in reply to Bea6]

I’m struggling with the loss of my Dad 😞. I feel so much loyalty and heart ache with people that are going through this MSA rubbish. If I can support in any way, I would like to. X

[Bea6 in reply to ZoeSweet7]

Good morning Zoe I really do feel your sadness for losing your dad. Grief is such a painful experience I lost my husband two years ago in March… So I totally understand where you are if there’s anything I can do even if it’s just a chat a listening ear please don’t hesitate to message me. I found it easier to try and fill my days with quiet times of nature things that made me feel at peace nothing takes the grief away pain is always there but it does get easier the waves of emotion get, as the time goes on. Thinking of you always. I’m doing okay one day at a time one battle at a time. Much love Bea