My daughter suddenly became ill last year, feeling very overwhelmed.

Sorry_Susan

Hello all,
My daughter (24 years old) has now sort-of been diagnosed. She suddenly became 'ill' in February last year and we eventually found words for what is wrong with her at the end of Dec 2019. She became 'disabled' overnight with chronic severe pain that limits her movement to the extent of having to use a mobility scooter.
Today I feel overwhelmed.

chiarieds

Hi @Sorry_Susan - Welcome to this very supportive community; I'm pleased you've joined us all. I can imagine that recent events have caught up with you. Having been there, I know it's very difficult when your children have problems, whatever their age, as it's just something you don't expect. Finding a name for the problem can be a relief, but it takes time getting used to it before you can accept it. But with your daughter, there seems to be a bit of uncertainty about her diagnosis, so perhaps you're left feeling a bit left up in the air?

Many of us here live with chronic pain, & limited mobility, myself included, so I'm sorry to read about this. You will find people here care about each other, & help as much as they can. We're a friendly bunch too, as you'll find when others join in. We also have some understanding, even tho we have different disorders, there is much that we have in common.

Please say if there's anything we can help you with, & also just talk here any time.

Sorry_Susan

Thank you, @chiarieds. Sometimes we just need a 'there-there'.
I am trying to get my daughter to join groups as she is incredibly down and isolated since becoming whatever-it-is-she-is.  Life is a bit of a struggle at the moment and getting around an issue. Even getting into the GP surgery is a challenge as we have to phone ahead to get the (very flimsy) ramp put out. Someone also has to hold the ramp down so it does not move while she uses it. Never realised how difficult it is for disabled people to get around. 

Chloe_Alumni

Hi @Sorry_Susan and a very warm welcome to the community. This must have come as shock. Has your daughter had much support?

I'm sorry you are feeling overwhelmed, it sounds like things have been really tough. Is there anything we can do to help? 

Sorry_Susan

Thank you @Chloe_Scope
So far, may daughter has had no support. We are in the process of applying for PIP and hoping that a blue badge will follow. Poor sausage had to drop out of uni in her final year as she could not attend due to the severity of the pain.
Eventually took the plunge and invested in a  mobility scooter and that helps as she can get out of the house. 
Can we help? - Just knowing the site is there is a help at the moment. I am urging her to join as I think she will find it very beneficial. We have to start making plans for her future but she does not seem ready yet.
How long does it take to adjust to this new way of life?

pollyanna1052

Hi Susan, do you mind if I ask what your daughter has been diagnosed with?
My own road to diagnosis has taken 22 years! I finally got it last month.

It`s been a helluva roller coaster.

Hoppe you and your`s are coping. Take care.
Polls xxx

Chloe_Alumni

Hi @Sorry_Susan, it might be useful for your daughter to have a needs assessment. She is able to refer herself and could allow her to access support or equipment.

Please do let us know how you get on.

chiarieds

Hi @Sorry_Susan - A few thoughts.

As far as PIP goes, it's all about how your disability affects any of the daily living components & mobility. Having a read of this rather long link will be helpful as it's the DWP's guide for the Health Care Professionals. It will give an indication of where points might be scored. If your daughter can describe, giving a couple of recent examples, the difficulty she's faced with each applicable 'descriptor' this will help. See: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria

If you're hoping your daughter may be able to join groups in your area, this link is useful: https://www.ableize.com/

There's also: https://www.befriending.co.uk/

Your GP may be able to tell you about 'Social Prescribing' : https://www.blurtitout.org/2019/10/03/social-prescribing/

There's lastly: https://thechattycafescheme.co.uk/

As I mentioned previously, it may take time for her to adjust to the difficulties she has; acceptance does takes time & we're all different. I have a genetic disorder, so gradually 'grew' into it as I slowly worsened over the decades. I don't know if it's easier this way, rather than suddenly having problems. Neither is much fun!

Hope some of this helps, & do look into Chloe's link.

Sorry_Susan

Hi @pollyanna1052
We have a  ‘I think it is’ small fibre neuropathy diagnosis. Does not seem to be a cause or a cure. Hey-ho.
Having a diagnosis does however help, as it is better than not knowing.
Hope your diagnosis leads to an improvement in your health.

April2018mom

Hello @Sorry_Susan. 

My son is disabled. It took me several weeks to embrace and make peace with my new normal. In the beginning of our journey back in the summer of 2016, I fought it. I even considered briefly a termination but eventually decided not to. Keeping a diary certainly helped to some extent too. His diagnosis was overwhelming at the time and I also struggled to see the positive aspects of our situation. Now I can read the words spina bifida and smile not frown like I used to. 
You can do this! Find a support group. It definitely helps. What about a therapist? I started seeing one approximately three years ago when my son was a baby and I was on maternity leave. My therapist was my high school friend. She would come out to my flat and we would sit at the kitchen table and chat for a good hour each time. Maybe try asking your doctor about local therapists?  
Also has she had a needs assessment yet? 

Sorry_Susan

Thank you @April2018mom. 
We are waiting for PIP, needs assessment, blue badge, help in general.
The waiting and paperwork is overwhelming, not to speak of the cost of getting to appointments. At the moment I find it overwhelming - felling a bit Sorry-Susan!
I don’t know where to turn for a there-there.
How long does it take before you started feeling in control of life again?

poppy123456

Sorry_Susan said:

How long does it take before you started feeling in control of life again?

Hi,

As a disabled person myself who also cares for my daughter who has Autism, a learning disability and social anxiety, the answer to that question depends on the individual person.

I've always said to myself, i can either stay home all day everyday and wallow in self pity or carry on the best way i know how and not let either of these get in my way. Yes, there's only a certain amount of things i can do and if i step over that line i pay the price later that day, so i chose not to step over that line and do a little at a time. I refuse to let my disability ruin and take over my life.

Regarding the blue badge, you don't need a PIP mobility award to get one of those. Your daughter can apply for one with her local council, sending evidence to support her claim. They'll most likely ask her to attend a quick assessment so they can assess her walking ability and then they will make a decision.

If she also claims certain means tested benefits then she can claim for the cost of traveling to certain appointments. See link for this https://www.nhs.uk/using-the-nhs/help-with-health-costs/healthcare-travel-costs-scheme-htcs/