'˜Sometimes it's so bad I can't get out of bed'
When Samantha Curry takes her children to school every morning, she often finds she gets some strange looks from people as she sits in her wheelchair.
But sadly that happens all too often to people who suffer from an invisible illness.
The 29-year-old has fibromyalgia – a long-term condition that causes pain all over the body. Now she wants to raise awareness and help to remove the stigma.
It all started with the birth of Sami’s youngest child, Ethan, who arrived in March, 2013.
She had spent time in hospital after experiencing severe stomach pain.
‘He was premature,’ she says.
‘What they didn’t know at the time was that I had an infection in my right fallopian tube that was stretching the tube and causing me pain.
‘I was on a lot of medication. I was in hospital for three weeks before I begged them to induce me because of previous experience.’
Sami, who also has three girls, had lost a baby, Zachariah.
‘I was terrified that we were about to lose Ethan as well,’ she adds.
‘In the end they took me seriously. I begged them because I knew that I was on a lot of medication and pain relief.’
Sami, who lives in Buckland, Portsmouth, says: ‘It was a really difficult time. I’ve suffered from depression since I was in college. When all this happened it brought back some horrible memories of when I lost Zachariah.’
After 13 days, Sami and Ethan were discharged and went home. But it didn’t last long.
‘The following morning I was in far too much pain,’ Sami says.
‘I went to my GP, who said I needed to go back to hospital. Within 48 hours they had me in surgery.’
Surgeons unblocked Sami’s fallopian tubes after discovering a lump. She had tried to breastfeed Ethan, but she was told she couldn’t have him with her and she wouldn’t be able to breastfeed him any more due to the drugs in her body.
‘After a few hours they said that there’s no way I could have the baby with me. I was devastated.’
And it’s this traumatic experience which Sami believes brought on her fibromyalgia.
‘They say that most of the time it’s triggered by an emotional or traumatic event. I couldn’t keep him in the hospital with me.
‘Because of the medication that I had in my system after being on general anaesthetic, I would have been passing those drugs on to him.
‘It took a lot away from me. It made it very difficult for me to bond with him.’
Sami was able to freeze her breast milk. But emotionally, it had destroyed her.
‘Within a few weeks I started noticing I was in pain all the time,’ she says.
‘I was always exhausted. I was more tired than I remember being as a mum with a newborn.
‘My muscles felt really weak. I couldn’t move properly.’
Sami, who is also mum to Elsie-Mai, nine, Lilly, six and Rose, four, had a blood test and some scans, but doctors couldn’t work out what the problem was.
But in the summer of 2014, Sami got the news that she had fibromyalgia. She was sent to see a rheumatologist, who did a pressure point test.
She says: ‘The first year after my diagnosis was probably the lowest I have been. There would be a lot of days when I wouldn’t be able to get out of bed in the morning.’
Sami did have a powered wheelchair which helped her to get out and about. But over new year her tyres were damaged by broken glass.
Each morning she faces a 45-minute round trip to take her children to school – and then has to do it all over again to pick them up.
She explains: ‘My eldest is living with her dad at the moment, which makes things easier. She was struggling a lot with my health as she is a worrier. But she still comes here and stays at the weekend.’
Sami has since had her fallopian tubes removed, so she can’t have any more children.
Now her main focus is controlling the pain from the fibromyalgia and taking care of her children.
She says: ‘I don’t think many people really understand it.
It’s difficult for close friends and family to get their heads around it.
‘My partner and I don’t live together because it’s caused so many issues. It’s very complicated.
‘But if I’m having a day when I can’t get out of bed, he will come and get the kids and take them to school for me.
‘I just want other people to be able to see, or at least understand, what this does to people. It’s an incurable illness. I’m not being lazy.
‘There have been several times that I’ve been down at the school gates in trackie bottoms when I haven’t brushed my hair or put make-up on because I just needed to get the kids to school.
‘I’ve had looks from the other parents and they’re very judgmental.
‘People need to understand that sometimes there is something deeper going on.’
Sami is raising money to repair her wheelchair and to make adaptations to her home. Visit justgiving.com/crowdfunding/Helpmakelifealittleeasier.