I've teenager with ME. Depression and anxiety.

[Saffy]

I have a teenager with ME and also depression and anxiety. I am posting this in the hope it will reach people and that maybe there is someone in a similar situation, as It is very isolating for my son and also for me,so if there is anyone in a similar situation whos teenager would like to be intouch with my son or you would like to contact me, we would be very happy to hear from you.Thanks.xx

My son is 18 and has had ME for many years now and although he has much improved from how he was(he was severely ill and unable to walk), he still suffers various symptoms and has awful pains,tiredness and a degree of varying disability because of it.
As time has gone on he has developed OCD and anxiety which ranges from mild to severe at different times.He also suffers with depression that has in the past been debilitating and now comes on and goes suddenly.
He has no friends as he was too ill to ever go to school in the later years. He use to try hard to get involved in the odd group but due to illness he could never physically maintain it, so he has been and is isolated.Over the years I have tried tirelessly, to find something he could comfortably attend or find some support by way of a befriender etc, but this has proved unsuccessful. When times are better he happily gets on with some creative activity and manages ok, but can often struggle with anxiety being outside.He doesn't have the confidence to be out alone and as I myself have fibromyalgia which affects me physically and neurologially, and the barrage of symptoms and degrees of pain that come with it, and also now arthritis and kidney problems,it means trips out happen rarely. My son is always very conscious about some facial features, planning to have surgeries saying that he will then be happier about that.He has now seen our supportive GP who understands, and he does see a maxillo facial surgeon due to TMJ pain and it has been said it might be possible for him to have jaw surgery due to his jaw not having developed fully-which is what he doesn't like about the way he looks- although he doesn't look disfigured at all,but he is pleased with this possibility of surgery.Any such surgery on nhs would take two years.He feels he would have one less worry once surgery is complete,although this option does hang in the balance on the nhs probably due to funds, and they seem to be more reluctant to offer this surgery for definate,and just continue to rebook him for follow ups and after such appointments he is always very depressed.
I know that he would like a friend and someone to talk to and this would really help him, but this connection is difficult to find.I would be so so grateful of any advice, information, anything that anyone can offer. It is heartbreaking to see my son like this. After he has been paralysed with debilitating ME for his young years and early teenage years, he is now paralysed with depression and anxiety.
Everyone needs someone to talk to don't they.The smallest of gestures from a friendly,understanding friend can really help to make a huge difference as I have found, and often it can make all the difference, and its a two way flow!
I would love a contact for my son,if anyone can help it will be so appreciated. thank you,
Have a good day.Very best wishes xxxx
Thank youxxxxx

[Melly1]

Hi Tilly and welcome,

I hope you find someone. Have you tried getting a befriender for your son through your local ME group? Could he join an ME forum?

I hope you enjoy the forum.

Melly1

[tracie]

Hi I have ME msg me if you like

[Saffy]

Thank you Melly for your reply. I have tried getting a befriender, sadly there is no such service available locally and our local ME group doesn't cater for young people in the social sense. However,since I posted my message there has been a breakthrough (only small but massive to us) our local YPS (young peoples service) have been intouch with a contact, and so he is now emailing another 18 year old with ME, so this is something at least and he is very pleased with this. I hope today is a good day for you and your son. Best wishes xx

Thank you tracie, I hope today that you are as well as you can be (although I know it can change from moment to moment). ME can be so debilitating and I do hope you are getting support for your situation. Best wishes. xx

[Melly1]

Tilly,

that is great news re the contact made through YPS.

Perhaps the two lads could lobby the local ME group to set up something for younger sufferers, they won't be the only two in the area. Or, if they lack the confidence their families could do so on their behalf.

S is alternating grumpy and loud with occasional cheerful spells, so it's a hard going weekend. He maybe sickening for something, again. He is unpredictable and tricky when like this. Thanks for asking.

Melly1

[Saffy]

Bless you Melly and thank you.... Its not easy is it.. but I know I get through -somehow- by having the knowledge now, that not every day is a bad one, that some are better than others and it is because of the better days that I can have hope, as I just know they will come again, and they do.
Your better day is just around the corner.

You're doing a fantastic job Melly.
Best wishes to you both xx

[Melly1]

Tilly;

but I know I get through -somehow- by having the knowledge now, that not every day is a bad one, that some are better than others and it is because of the better days that I can have hope, as I just know they will come again, and they do.

Too true. We've had worse days and better days than this.

Melly1

[Dan_141023]

Hi I understand your situ re your son.I have been a carer & activist since 1989.
Sometimes depression & anxiety are part of M.E. & not separate.
learn to manage one part & it can help other symptoms.
Isolation is a v.big problem. May I suggest you try not to limit contact to his immediate age group. if he has an interest-music etc maybe that is a way forward.
though i am in norfolk,i am here if you need contact. I have run helpline for many years
thinking of you & your son dan

[Saffy]

Hi Dan, and thank you for taking the time to reply.
At present things are better. My son has been getting along quite well and has not had any 'bad episodes' of depression for a while now. He is more positive and back to doing things i.e craft/music, and using these 'good feelings' to plan for future things to do-we are visiting the YPS (young peoples service) this week to discuss his options.
I know he has had both good and bad periods in the past that have come and gone, so I am aware that this may not be a permanent recovery. I am as always optimistic, and grateful that he feels better and that he can make connections during this time, which I hope will help him feel confident and able to move forward.
Best wishes

ME and Depression.
In my experience, research and understanding,
I believe that any illness/ long term condition, may cause the sufferer to suffer with depression, but that depression is not a symptom of ME only due to ME.

On a separate issue.
It is becoming widely-but slowly- acknowledged by the medical profession that ME is a physical illness(as any ME sufferer knows all too well), and so finally ME will cease to be classed as a psychological condition which it has been wrongly labeled for decades.
This will go a long way to improving the anxieties of the ME patient!
http://www.investinme.org/InfoCentre%20faq-home.htm
http://www.tymestrust.org/pdfs/ttmeisphysical.pdf