This blog is supposed to be about living with multiple disabilities in the family, so that includes all of us in our household (everything seems to be about households lately). Therefore, it makes perfect sense for me to include here my own part of what has been going on in our household recently.
I am still coming to terms with the health issues I have myself. There seem to be new symptoms popping up, unwelcomed, frequently. The GP keeps repeating tests and spiel that I have already been through. I know that is what will happen at the GP so I always put it off as long as I can, then go through almost desperation, only to be disappointed that they repeat the above over and over. Then I am left wondering why I bothered them in the first place.
Over the last couple of months I have been to A&E twice for myself, both times regarding the same issues and symptoms. Both times I had the same procedures carried out, the same tests, the same spiel and was sent home to go through it all again at home not wanting to waste anyone's time by going to the hospital again (not to mention that the hospital has been the last place I have wanted to be near during this pandemic).
I have also been to the GP twice over the same time period, for the same symptoms, had the same tests and spiel and been sent home to go through it all again without bothering anyone.
If you are reading this and are someone without chronic illness perhaps that last sentence seems nonsensical to you, but trust me, there are many chronic illnesses that cause scary symptoms and we put up with a lot before we approach medical professionals because we (people with chronic illnesses) know, from experience, that they do nothing.
I have had so many repeated blood tests (telling the phlebotomist every time that I need a butterfly needle using because my veins are awful....they never listen), ECGs carried out, chest x-rays and tests of various bodily functions over the years that hospital doctors always comment on the size of my medical notes for someone of my age. If only they would listen to me every time I have to see one of them, they would save a lot of NHS money and time. But they never do.
I took this copy of the meme from Bing images search, but it is frequently doing the rounds on social media platforms.
Doctors (generally speaking....I have met one or two good ones along the way) just don't listen. They hear one symptom, have a thought and run with it, totally ignoring you from then on.
Example:
Just yesterday I contacted my GP after having heart palpitations, chest pains, numbness in three digits, foot and ankle swelling and awful acid reflux. She phoned me back (everything has to go through telephone triage during the pandemic), heard that I have heart palpitations and told me the acid was a separate issue to be dealt with separately. She told me I needed to be seen but to go to A&E if I felt in danger. I explained to her I had been there twice recently with the same issue, at which point she looked at my notes for the first time (!!) and saw that was true, also that I had been to the GP about it before too and gave me an appointment time later in the afternoon.
When I got there, it was the healthcare assistant who I saw first. She did an ECG (again), checked my temperature, blood pressure and pulse whilst I had chance to read my printed out notes summary. I saw that someone had scrawled on there that I needed an ECG (again), h-pylori test (again) and to be referred for an endoscopy (the second referral for this, but i haven't had one, just the joys of a sigmoidoscopy) and a 24 hour ECG (again, i was supposed to have been referred for this in February but when it came round the pandemic had begun and so everything was off.
I explained I had already had a H-pylori test and it was negative, but, as usual, because it wasn't this specific GP who had ordered the tests, I had to have them again. So, I was told to wait for the results (again) and then to back to her again (really?) so she could refer me for an endoscopy depending on the results (again). The ECG was normal (again), so I was told that an ECG will often be normal at times when the main symptoms aren't occurring (again) and that a 24hour ECG would be better. This left me wondering about the sporadic symptoms of chest pain and palpitations with numbness- what if they don't occur during that specific 24 hour period? I don't get them everyday.
She had also written down that I used to take a medication for the palpitations (I actually still take it, along with two other medications for my heart) and that I take medication for acid reflux (actually, I am on the maximum dose and still getting significant symptoms which the previous two GPs have told me needs an endoscopy, but you can't ever get the same GP twice). She was not interested in the numbness, swelling or dizziness. My heart rate shoots up to over 120bpm when i am doing nothing sometimes and it feels like my heart is trying to escape my body. During the ECG I saw it was at 112bpm, but the GP wasn't interested at all. So, I wasted over an hour there with no difference.
I have had so many tests and procedures carried out that I am extremely cynical of the medical profession. They find something, tell you the name, sometimes give you medication (depending on what they find) and that is that. It was the same when my children were diagnosed with autism. The professionals assessed them, agreed with what we had said all along, gave it a name (autism) and that was that. Good luck and off you go. I don't think it is enough.
Aswell as these glorious visits to A&E (following the green lines not the red), the GP (wearing the face mask), we have been dealing with a lot more...
(|I get some funny looks, but being in a wheelchair I am used to that)
....leaving an abusive relationship several years ago has caused us financial hardship as a family for a long time. We have never been able to settle properly and feel safe anywhere because there is always the possibility he could find us. He has access to NHS records (yes, I know they aren't meant to access them but you aren't meant to do a lot of things he did) and that terrifies me. I have asked for them to be locked but because things didn't go to court the NHS can't do that. |it is extremely frustrating. If we didn't have any health issues I wouldn't register with a GP or dentist, but we can't do that unfortunately.
Anyway, since leaving him we have had to move five times. That is five houses that needed decorating, five houses that needed flooring, five houses where our furniture didn't fit so we had to source different furniture, five lots of new insurance, five removal companies, five gardens that needed childproofing and dog proofing, five gardens that needed securing from the outside world, five times we have had to pay the remainder on our TV bills and so on. I am sure you get the picture. We have also had to change our car (vehicle...we had a van for a while) twice before getting a Motability car, needed to pay privately for autism diagnoses because the type of autism two of our children have is not diagnosed here on the NHS, had to pay privately for MRI scans and other medical scans because the NHS doctors don't do them, needed to buy mobility aids as my condition deteriorated quickly (they are not cheap- honestly, you put the word autism or disability in anything and they add zeros to the prices). Being on benefits is tough enough without having to go through all of that. Having autism is tough enough without having to move house and everything changing so often.
We needed to use a foodbank one day and we saw a desk set up in the corner, run by a money advice charity. We spoke to the advisor and were advised the best way forward for our situation. We have taken her advice and are waiting to hear back (everything is slow at the moment because lots of people are working from home).
As well as this we have been dealing with violence and anger from our son for the last seven or so years. He has always struggled with anger but as he has aged and become stronger it has become more difficult for us to handle. We got pushed beyond our limits last month and he moved out. We tried to get social services to help us being him back home, but they wouldn't. They twist every word you say and try to get you off their books as soon as possible, costing them as little as possible.
Scenario 1. Continue to put up with the violence, aggression and anger at home with two younger siblings with additional needs terrified and my husband being physically assaulted.
Scenario 2. Make the house safe by taking my son to his biological father's side of his family as an emergency measure whilst waiting for social services to step in and support his return home.
Scenario 1 would be us putting the two siblings at risk and social services would step in. It would also mean the stress and threats would continue. We have gone this way for years, hoping for help from all the services I have approached, but all they could offer was two hours now and then at a sports activity he hated and got into trouble at.
Scenario 2. The home is instantly safe, he is safe, social services are aware.
This time we took scenario 2. Because he was with a member of family (it could literally be anyone who is family, no matter how distantly related, or even a friend) social services no longer see a need for them to step in. They can't put him into temporary foster care because he is safe with that member of the family (300miles away) and can't work with us to bring him home safely unless we take him back into the home now.
Obviously there is no chance we could just pick him up and bring him home like nothing had happened. I had contacted CAMHS, spoken with a team who support families to stay together and could work with him in foster care locally, had got towards the end of the process for him getting into a perfect special school for his needs, but his biological father's parents told social services they wouldn't allow him to go into care. The end.
I haven't seen him since the beginning of last month. He no longer answers my messages or calls and his father has told the social worker (who no longer has anything to do with us) all contact has to go through him, but he doesn't answer my texts or calls either. We have boxed up his things, but they won't come and collect them. His father was quick to get onto child maintenance though and tell them the date he left here! My instant reaction when they said they wouldn't allow him to go into care was that it was financially beneficial to them to take him in. They have been very very quick to sort all that out.
The part that sits awkwardly with me, other than having to accept I basically now only have two children instead of three, is that he isn't living with his father. The 'reason' I am given is that his father lives with his girlfriend....and?.. I find it extremely weird that he hasn't ever been to their house either. To be totally honest it feels as if he has died. I know we did the right thing and I fought as much as I could for him. I know we did the right thing for everyone and the home is much calmer now for it, but I am still his mother and it hurts that he won't even have contact with me.
On top of all of that I am struggling quietly with feeling down. I have had depression before, more than once and know what it is. I am trying to fight it off, but there seems to be so many things going on at the same time (but there always are in our lives) that there is no escape. It isn't to do with the pandemic- I have found it a positive experience to have my family home more and not be home alone so often. It does mean that i am cancelling care calls more often though because I just don't want a stranger coming in and going through the motions. I would rather stay in bed or stay up late in my clothes and wheelchair. I got in trouble before with my "social worker" so am waiting for this to happen again. But...I am an adult. Surely just because I need the help of carers for personal care morning and evening doesn't mean I don't have the right to cancel them time to time? I went to the GP earlier this year about feeling depressed and suicidal. She told me she couldn't put me on any antidepressants because one of my painkillers is also an anti depressant so it would mean changing that slowly. She gave me a phone number to ring and that was that. So I haven't bothered since. I do email the Samaritans now and then when things get too much. I am useless on the phone and find texting or emails much better.
So yes, the country has been in lockdown, people have been stressed about being home, being on furlough, not being able to go to the pub or cinema, having to only have one exercise a day, now expanding their household bubble to include another and it has been awful. It truly has tested everyone. But there have been beauties along the way- just look up the positive effects on nature, the smog levels across the world, kindness shown by people to others and everyone noticing nature more. The pandemic cannot be blamed for everything. Life goes on and as the saying goes "this too shall pass". When it does, all the normal life issues will be there, waiting for you.
Images from Bing search for free clipart or personal albums
If you need to contact the Samaritans by email: jo@samaritans.org
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