Being a carer for a child, or relation, with complex symptoms can leave you physically and emotionally tired.  This is magnified if, as is often the case with a hereditary condition such as

EDS-H / JHS, you, yourself, suffer symptoms of the condition as well.

 

 

The following support is offered from one parent to another upon diagnosis of their child’s EDS-H / JHS:

 

‘Take care of yourself. I know this is much easier advice to give than to act on, but unfortunately, you are in for a long haul. This is not a situation where your struggles end when you find the right doctor or a cure-all operation. So you are going to need to keep caring for yourself, body and soul.

 

You cannot keep giving to your child when you have nothing left to give. And your work will never be 'done." So, hard as this seems:

 

• Make time in your schedule for whatever recharges you.  Go out for a walk on your own, taking an ipod so you can loose yourself in spoken word books or music, make time for a relaxing bath or a rejuvenating swim.

• Ask for and accept help if at all possible-- remember, you are doing this for your child-- the help is a gift to your child, through you.

• If you are suffering from symptoms of EDS-H / JHS too, try to get your needs looked at as well, consider booking an appointment for yourself on the same day as an appointment for your child, in order to avoid multiple hospital visits.  If your symptoms are similar, maybe you could try carrying out stengthening physio routines, with your child, use music, have fun – maybe you can motivate each other.

•  Ask people who love you to set up a weekly phone visit at the same time once a week-- being able to count on it can really help you through bad days.

• You must somehow find a way to keep going, while still beaming at your child at least some of the time, and that means adopting the pace of a long journey.

• You will need support for yourself. Use a forum or board. Join a local support group and if you can't go in person, ask if they would consider free conference calls, especially as those with EDS often find travel difficult. Any meeting works well when there is a moderator and presenter.

• Don't make the difficulties the sole topic of conversation with those you love; share your reality, but don't stay in the hard stuff the whole time you are talking.  It will help you keep in balance, too.

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(Quote: These thoughtful words of support, which explain their message so well, have been re-posted several times online, but edhs.info has been unable to find details of the original author.) 
 

“Taking time out to look after yourself is very important, and is in no way selfish – in fact, we think of it as selfless,” says Moira from Princess Royal Trust. “If you don’t look after yourself, you won’t be able to look after anyone else. Taking regular breaks helps you both, and is especially important when you are ill yourself.”

 

On its webpage ‘10 things every carer should know’, the Princess Royal Trust for Carers advises that carers should find out if they are eligible for financial support and benefits including Carer’s Allowance; Income Support, Carer Premium, Tax Credits, Disability Living Allowance, Housing Benefit, Carer’s Credit (which helps protect your State Pension if you’ve had to give up work), Direct Payments (or Self Directed Support if you live in Scotland) and any available grants that can help with the cost of a short break, transport or specialist equipment or a domestic appliance.

 

 

If you are able to continue working, you may still be able to claim some benefits. You should also let your employer know you are a carer. The introduction of flexible working for carers has helped improve the situation at work for many carers.

 

The Carer’s Allowance Unit provides information on eligibility and how to make a claim for Carer’s Allowance.

 By edhs.info